tag:blogger.com,1999:blog-71026265100502102522024-02-08T08:41:09.502-08:00Give Me a Napjmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.comBlogger115125tag:blogger.com,1999:blog-7102626510050210252.post-18381641249277446012018-06-14T16:53:00.001-07:002018-06-14T16:53:31.031-07:00Whose story?<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-o7aBq8tGd2E/WyBgA13u4qI/AAAAAAAAC2s/oVka4c2DZBsIHbKL8nANMog959MdM7eMwCLcBGAs/s1600/IMG_8122.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1544" data-original-width="1160" height="400" src="https://4.bp.blogspot.com/-o7aBq8tGd2E/WyBgA13u4qI/AAAAAAAAC2s/oVka4c2DZBsIHbKL8nANMog959MdM7eMwCLcBGAs/s400/IMG_8122.jpg" width="300" /></a></div>
In looking for something in our garage, I found a gem: a little green notebook titled "baby's health." It's the only semblance of a baby book that I kept for Soren, since I was pretty overwhelmed with postpartum depression and anxiety for most of his early months. So this little health notebook was was where I kept Soren's earliest and only records. There are glimpses of his first days--when he pooped, peed, and breastfed. The maternity ward's bracelets are there for both of us. The notebook is overly detailed especially at first, and I have to laugh at how much it reflects the early days of a first child. At first I wrote in it constantly, and then I weaned myself to every week and then every medical checkup. And then at year 3 or 4, the entries stop. I probably misplaced the book when we moved to a new house.<br />
<br />
In advance of Soren's 8-month regular medical checkup, I had written a reminder to myself that I had forgotten.<span style="color: #444444;"> </span><i><span style="color: #444444;">Soren is banging his head--ADHD?</span> </i>So I must have asked Soren's pediatrician about ADHD. Many kids bang their heads, but now I know that many more autistic kids bang their heads. I had forgotten that Soren did this. Maybe it's a tiny peek into what was truly distinct about our boy way back then; perhaps his autism may have shown itself much earlier than I first noticed it and then had it confirmed, at about 2.5 years through 3.5 years.<br />
<br />
And last month, in collecting some books for Goodwill, I found something that gave me pause. Scotch tape on some toddler/preschool books that Soren still reads. The tape marks the weeks when I finally started to think that something was atypical, but surely it wasn't when Soren started to <span style="color: #444444;"><i>be</i> </span>atypical. What stands out is how careful those tape sutures were, as if I was trying to make the rips invisible to others. I taped on both sides of the page, and got that little overlap of the rip mended just right. And I distinctly remember doing this taping as I sat on the floor and fretted, probably 7 or 8 years ago. I was horrified that he kept ripping precious books. It was incessant. Now I know that this ripping was probably a sensory-seeking behavior, which is common in autism. And now it's no big deal that this occasionally happens. Today I think, how fun would it be to just rip leaf upon leaf, hearing that crisp sound and making tiny shards of paper to cover your bedroom floor? And how weird it might have been for Soren to have seen me, well, freak out completely about something that seemed innocent and fun to him. I probably yelled, scooped up the books (but not the boy, I regret now). I knew that something was amiss. I was starting to grieve.<br />
<br />
What I realized after I saw these two artifacts was: These are milestones that are mine, not his. I can't write his story, so I write mine. I write about the grief (or surprise, or exhaustion) that's mine, not his. Perhaps he has always been autistic, but I grieve when<span style="color: #444444;"> <i><span style="color: #444444;">I</span></i></span> notice the atypical behaviors. Soren may not be grieving at all! Ours are two different trajectories, and I need to remind myself of this. We are not on a joint journey, and I know I thought of it that way before.<br />
<br />
I'm learning, slowly, what it means to be a parent of a disabled person, and how that means I don't speak for my son. I can guess about his experience, but I could be so far off. He has a whole world view and personal history that are his own. And I'm sorry that I've missed out on years believing that we share our memories and our interpretations. I'm trying to let Soren have his own story.jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com1tag:blogger.com,1999:blog-7102626510050210252.post-48746075871299507082018-04-01T17:37:00.002-07:002018-04-01T17:37:56.099-07:00Looking autisticWe did a (successful!) photo shoot with Soren and our new-to-us dog, Moses, at a beautiful Seattle park this week. Our wonderful in-home ABA behavioral technician, Breanna (@breannasandefurphotography), is also an amazing photographer who totally loves and gets Soren, so she got some amazing shots, including many with Soren happily looking at the camera, which is rare for us.<br />
<br />
There are so many shots of Soren where he looks like typical 10-year-old--confident, goofy, sensitive, a little sassy.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-7-5LHl2ScMQ/Wr2Hli5kLyI/AAAAAAAACy8/zCP3KrC-7XAuGL19Rpu10pQ94cQS0zeqACK4BGAYYCw/s1600/IMG_4161.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://2.bp.blogspot.com/-7-5LHl2ScMQ/Wr2Hli5kLyI/AAAAAAAACy8/zCP3KrC-7XAuGL19Rpu10pQ94cQS0zeqACK4BGAYYCw/s400/IMG_4161.jpg" width="266" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-taARzoPcuKY/Wr2HlaDzLpI/AAAAAAAACy4/L1JajEkwIyg3PyEoN9MfpbI3kVLeVQ7WwCK4BGAYYCw/s1600/IMG_4224.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://4.bp.blogspot.com/-taARzoPcuKY/Wr2HlaDzLpI/AAAAAAAACy4/L1JajEkwIyg3PyEoN9MfpbI3kVLeVQ7WwCK4BGAYYCw/s400/IMG_4224.jpg" width="266" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-ocdCUkv-Cjg/Wr2HlT7BK7I/AAAAAAAACyw/WKBcdarVHy8dQu4Lih10H0_wXjYlvRagwCK4BGAYYCw/s1600/IMG_4240.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://2.bp.blogspot.com/-ocdCUkv-Cjg/Wr2HlT7BK7I/AAAAAAAACyw/WKBcdarVHy8dQu4Lih10H0_wXjYlvRagwCK4BGAYYCw/s320/IMG_4240.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-N24UhRs6htY/WsF59avbUbI/AAAAAAAACz0/fpCYD3CKamcRfai_QUJ3m6JiC2g_cYBIQCLcBGAs/s1600/IMG_4482.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="400" src="https://4.bp.blogspot.com/-N24UhRs6htY/WsF59avbUbI/AAAAAAAACz0/fpCYD3CKamcRfai_QUJ3m6JiC2g_cYBIQCLcBGAs/s400/IMG_4482.jpg" width="266" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
And then there are those in which he looks just a tad...different. You know when you see these photos that something is just a tiny bit off from what you'd expect. Maybe it's the flapping, the skipping, the sucking on his ID necklace. Maybe it's not looking at the camera. Simply put, he looks autistic.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-U8h2uQN0vUs/Wr2HCz6YKjI/AAAAAAAACxg/73Dbje5wdkcpnKn01J38N-JInd16hytPwCK4BGAYYCw/s1600/IMG_4144.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://3.bp.blogspot.com/-U8h2uQN0vUs/Wr2HCz6YKjI/AAAAAAAACxg/73Dbje5wdkcpnKn01J38N-JInd16hytPwCK4BGAYYCw/s400/IMG_4144.jpg" width="266" /></a></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-qV8weYj7vv0/Wr2HCl36uDI/AAAAAAAACxY/ke-HdBmtFzMoz-7v3LiQbGZJZsoqMvddQCK4BGAYYCw/s1600/IMG_4159.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://4.bp.blogspot.com/-qV8weYj7vv0/Wr2HCl36uDI/AAAAAAAACxY/ke-HdBmtFzMoz-7v3LiQbGZJZsoqMvddQCK4BGAYYCw/s400/IMG_4159.jpg" width="266" /></a></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-z8iit56dujU/Wr2HC9KYCkI/AAAAAAAACx0/IYalsqFtU3kD3herO5GaFoqsIdtSCJMxwCK4BGAYYCw/s1600/IMG_4166.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://3.bp.blogspot.com/-z8iit56dujU/Wr2HC9KYCkI/AAAAAAAACx0/IYalsqFtU3kD3herO5GaFoqsIdtSCJMxwCK4BGAYYCw/s400/IMG_4166.jpg" width="400" /></a></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-JS8uzxWy0xw/Wr2HC2fjy-I/AAAAAAAACxo/nxXUHnMuYRUWsIrBH2ZjY3eUCQZ3zP3oQCK4BGAYYCw/s1600/IMG_4269.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://2.bp.blogspot.com/-JS8uzxWy0xw/Wr2HC2fjy-I/AAAAAAAACxo/nxXUHnMuYRUWsIrBH2ZjY3eUCQZ3zP3oQCK4BGAYYCw/s400/IMG_4269.jpg" width="266" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-TFFakZl6MJM/Wr2HC3aD_CI/AAAAAAAACx8/1pj56b-VjDU9iEgYhqf0Ir2ZRx6dZBAGQCK4BGAYYCw/s1600/IMG_4294.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://2.bp.blogspot.com/-TFFakZl6MJM/Wr2HC3aD_CI/AAAAAAAACx8/1pj56b-VjDU9iEgYhqf0Ir2ZRx6dZBAGQCK4BGAYYCw/s400/IMG_4294.jpg" width="266" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-CJb8SF3FuR4/Wr2HDAgP1eI/AAAAAAAACx4/2tZxyetGnLIo_He3lRZ-oFTFn3JXwUQywCK4BGAYYCw/s1600/IMG_4487.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://3.bp.blogspot.com/-CJb8SF3FuR4/Wr2HDAgP1eI/AAAAAAAACx4/2tZxyetGnLIo_He3lRZ-oFTFn3JXwUQywCK4BGAYYCw/s400/IMG_4487.jpg" width="266" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-tWMqufW6JmE/Wr2HC47VKCI/AAAAAAAACxs/FQ8xw7EovDULwmJQoNtGvsD90epc_cAYACK4BGAYYCw/s1600/IMG_4494.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://4.bp.blogspot.com/-tWMqufW6JmE/Wr2HC47VKCI/AAAAAAAACxs/FQ8xw7EovDULwmJQoNtGvsD90epc_cAYACK4BGAYYCw/s400/IMG_4494.jpg" width="266" /></a></div>
<br />
<br />
<br />
Seven years ago--heck, maybe even just last year--I would have shown you only the first set of photos. I've been reflecting on why that was. I would have wanted to show you a typical shot and think, "See, my kid can be beautiful and look normal and you wouldn't even know...." <i><span style="color: #444444;">I</span></i> would have wanted the typical experience of a photo shoot, something to cross off on my parenting checklist. I would have wanted what you have regularly without giving it a second thought--the effortless photos, ready to overshare on social media. If I squinted my eyes just a bit, this would look like an everyday, typical experience, and that was important for me to portray. For my sake.<br />
<br />
But the second batch is Soren, too. Maybe more so. They are the ones that tug on my heart more, because these are the unique boy that I know and love. And lately, showing you only the first set of photos seems like faking, or even lying. You should know and see <i><span style="color: #444444;">all</span></i> of this boy, not just the parts of him that look typical and that don't make you or me feel uncomfortable.<br />
<br />
I don't believe Soren is embarrassed by any traits or behaviors of his that stick out. If you could have seen him prancing around and grinning in that park, so excited to just run around in a huge space, you'd agree that he was wholly himself. He can't help but show that fullness to the world.<br />
<br />
So today I'm going to show you Soren's whole person, without any hesitation. Look, everyone. This is my boy. All of him. Isn't he amazing?!<br />
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com2tag:blogger.com,1999:blog-7102626510050210252.post-16082458446028607622017-04-07T11:07:00.000-07:002017-04-07T11:07:03.370-07:00Hard things<div style="text-align: center;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-XP6zfMGcd5A/WOfUTtZEv6I/AAAAAAAACpU/YYS5M08gJiQS7BI7kQeruCIsfjx1jWiwQCLcB/s1600/IMG_0334.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://3.bp.blogspot.com/-XP6zfMGcd5A/WOfUTtZEv6I/AAAAAAAACpU/YYS5M08gJiQS7BI7kQeruCIsfjx1jWiwQCLcB/s400/IMG_0334.JPG" width="400" /></a></div>
“That was the thing about the world: it wasn't that things were harder than you thought they were going to be, it was that they were hard in ways that you didn't expect.” </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
― Lev Grossman, <i><span style="color: #444444;">The Magician King</span></i></div>
<br />
<br />
Parenting Things are hard right now. I can't go into specifics, but the theme of hard parenting in general may be familiar in your own life, too. Parenting shifts. There's more pushback, more questioning, on both sides of the dyad. We need each other less, or in different, difficult ways. In my more childish moments, I hear myself saying "This isn't fun."<br />
<br />
No one ever promised that parenting was always easy or fun or delightful or predictable. But things are harder in ways I wasn't expecting. I'm was already girding myself for my child's puberty, my own aging, his transition to adulthood--but the parent-child relationship when my little guy is 9?? I wasn't expecting this challenge.<br />
<br />
<span style="color: #444444;">He's not like he used to be. He's different from his 8-year-old self, his 2-year-old self. I had gotten used to that little guy. I was used to predictable parenting.</span><br />
<br />
Here is the hard stuff, for me: exhaustion; loneliness; isolation; embarrassment. I say to myself: No one would understand this struggle, these specifics. I can't tell anyone about this. I shouldn't be honest about how I'm feeling to my friends, my family, my spouse. I'm the only one I know who deals with this. It's hard. It's hard. It's hard.<br />
<br />
<div>
Where's my parenting mojo, my tenderness? This certainly can't be my baby. I hardly feel any of those loving, protective, mama bear feelings right now.<br />
<br />
The real questions below the surface are the ones that break my heart: <i><span style="color: #444444;">And how can I be mad at THIS child, who has so many challenges?? Really? You're MAD at him? You're mad at HIM? </span></i><br />
<i><span style="color: #444444;"><br /></span></i>
<span style="color: #444444;">Yes. I think I am. I'm often mad at my child. This may be a completely standard situation for a mom and her typical 9-year-old. This may be a typical 9-year-old's change in behavior. This may show that parts of Soren's development are right on schedule. But when a child like Soren is your only child, this anger shakes you. </span><br />
<br />
<br /></div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com3tag:blogger.com,1999:blog-7102626510050210252.post-27598848545148374392017-02-25T16:49:00.000-08:002017-02-25T16:49:21.696-08:00Living with ambiguity<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. </div>
<div style="text-align: center;">
Delicious Ambiguity.”</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
--Gilda Radner</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-2QtmtYG9JP4/WLDlSbEdaXI/AAAAAAAACn8/-1Had2n7z3MaU24IG6mlEeUK7GuJTWvRgCLcB/s1600/IMG_0396.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="400" src="https://4.bp.blogspot.com/-2QtmtYG9JP4/WLDlSbEdaXI/AAAAAAAACn8/-1Had2n7z3MaU24IG6mlEeUK7GuJTWvRgCLcB/s400/IMG_0396.JPG" width="312" /></a></div>
<br />
<br />
When I worked for a decade at Microsoft, "dealing with ambiguity" was a core competency--a trait that was valued and measured on performance reviews. It meant: How can you deal with the job when when things are not neatly packaged and ready? What do you do with the open questions? Are you paralyzed because all your steps are not yet known, or can you find (or create) a path?<br />
<br />
I like to think that I've perfected this core competency in the years since. Parenting in general probably advances your skill at dealing with ambiguity, but parenting Soren makes dealing with ambiguity an everyday task. I've gotten used to the unanswered questions: <i><span style="color: #444444;">Why did Soren regress so late, leading to a very late diagnosis of autism? Why did </span><span style="color: #444444;">so much</span><span style="color: #444444;"> language disappear compared to other autistic peers? What is he capable of? Will he ever speak again? What will we do when he's a teen? an adult? Will he always live with us? What will he do after Erik and I have died? </span></i>You can see that there are layers of open issues at any time. The way I've dealt with this ambiguity is to really embrace the notion of non-attachment.<br />
<br />
Some liken non-attachment to detachment, or letting go. I like to think of it as not clinging. And believe me, I've spent so many months or years clinging to, insisting on, <i><span style="color: #444444;">demanding</span></i> answers to the open questions in our lives. But now, when people ask me about Soren's history of speaking and express hope that he may speak again, my response is that--truly--I don't care if he does. Does that sound harsh, uncaring, indifferent? I don't feel that way. I feel like this detachment gives me peace and a way of relating to the world as it is, not the way I want or hope it to be. It's oddly comforting to let life roll right over you like this. And in this way, I often pity those parents of typical kids, who have such regimented "musts" and timelines for their kids--it's not ambiguous at all. I have no idea what my kid can do, and when he will do it, so every little development is a huge victory and a surprise.<br />
<br />
I should mention that this <span style="background-color: white;"><span style="font-family: inherit;">blasé</span></span> way of looking at life hasn't come easily. There were so many months and years that I felt like I was fighting--fate, God, life, Soren. If my will alone could have changed things, I would have had a "cure" in seconds. I have made my share of deals, promising/hoping/demanding so much in exchange for a "healed" child. But my heart hurts less when I'm not yearning. And not yearning means that I'm more accepting and notice more about what's happening in front of my eyes, not what's in the past or in the future.<br />
<br />
Try on non-attachment for just a little bit. Let your expectations go, but keep your delight when your child--or your life--surprises and amazes you. Without the cloak of expectation, this delight will be even stronger and more meaningful. I promise.<br />
<br />
Delicious ambiguity, indeed.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com2tag:blogger.com,1999:blog-7102626510050210252.post-58150232744336468302016-10-14T20:14:00.000-07:002016-10-14T20:14:26.114-07:00OlderSoren was an adorable baby and toddler. I didn't really register that fact at the time; acknowledging his beauty seemed boastful, and certainly all mothers think their children are beautiful, right? But looking back, I see now how darn cute he was, and how his cherubic little cheeks and happy smile enchanted strangers and wooed family and friends.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-uOfATv1OptE/WAAm8-KVWQI/AAAAAAAACkw/7bAs0hhtG1k4oahYG4gntXZNqNFH34pswCLcB/s1600/DSC03649.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="343" src="https://2.bp.blogspot.com/-uOfATv1OptE/WAAm8-KVWQI/AAAAAAAACkw/7bAs0hhtG1k4oahYG4gntXZNqNFH34pswCLcB/s400/DSC03649.jpg" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-L0x6mnMrSJc/WAAnQoqGFhI/AAAAAAAACk8/Puq6uwvxxtstmOHjm81cX5iIuxsGKhwIwCLcB/s1600/IMG_1098.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://1.bp.blogspot.com/-L0x6mnMrSJc/WAAnQoqGFhI/AAAAAAAACk8/Puq6uwvxxtstmOHjm81cX5iIuxsGKhwIwCLcB/s400/IMG_1098.JPG" width="300" /></a></div>
At nine, Soren is lanky--okay, skinny, really. His teeth still seem too big for his face, and his pants are frequently falling down because he has no hips. He's strong, and handsome, and certainly still a charmer. But cute? Perhaps that's fading, which is totally expected for a 9-year-old.<br />
<br />
Yet the waning of cuteness comes with a cost for a child with autism. Cuteness excuses lots of atypical behaviors. A chubby little 4-year-old who flaps or lies down in the middle of Safeway is odd but adorable. The 9-year-old who does the same things is outright weird, and a 15-year-old who might do the same things might seem just plain transgressive.<br />
<br />
All parents mourn their child's babyhood to a degree, and they chant that (really annoying) adage about enjoying each day, for they grow up so fast. But losing my child's toddlerhood and young childhood takes a toll on him and on us in ways I wasn't anticipating.<br />
<br />
Nine is awfully close to puberty. <span style="background-color: white;">And male puberty is perceived as a bit scary in this society, especially when a young man acts in atypical ways that might seem threatening. I espec</span>ially worry about Soren's puberty when it comes to the police. With a dad who is 6'8", Soren is bound to be tall. And he is bound to continue many atypical behaviors. And there's that whole nonverbal thing. If my big kid acts in ways that are not "normal," will the police recognize that that difference stems from his autism? Or will his difference make him a target (or a victim)?<br />
<br />
It's easy to have compassion for the littlest ones. They are fragile, malleable--savable from their disability, perhaps. But an older child or adult with a disability is a strong reminder that the disability didn't go away, and that we don't really know what to do with disability--combined with puberty, sexuality, and physical strength--when it's in adults. It's as if the only way we know how to deal with disabled people is by infantilizing them, treating them as helpless little adorable babies. Our model doesn't work when it comes to disabled adults. We know that the pity and protectiveness that worked with small children don't work with adults, but we're not sure how then to relate to disability in its matured version.<br />
<br />
Today I have a plea for those reading this. Keep that empathy and gentleness that you feel when you see a 2-year-old with an obvious difference. But add in extra respect and understanding as that adorable toddler becomes a strapping young man. Use an age-appropriate regard--without pity or fear--that you'd use for any 9-year-old, or 15-year-old. Or 54-year-old. Because in this house, we'll be there sooner than we think.jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com3tag:blogger.com,1999:blog-7102626510050210252.post-43254157933710365132016-05-25T16:57:00.002-07:002016-05-26T17:54:55.113-07:00Our solitude<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-aQe5rZOeYYE/V0YyOhwN6-I/AAAAAAAACfo/vnmOQkf1NrkK95HzzvMhDtgXRKCTkmHggCK4B/s1600/IMG_5993.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://4.bp.blogspot.com/-aQe5rZOeYYE/V0YyOhwN6-I/AAAAAAAACfo/vnmOQkf1NrkK95HzzvMhDtgXRKCTkmHggCK4B/s400/IMG_5993.JPG" width="300" /></a></div>
<br />
I came across this quote via <a href="https://www.brainpickings.org/2014/12/17/wendell-berry-pride-despair-solitude/"><span style="color: #444444;">Brain Pickings</span></a> the other day:<br />
<br /><i><span style="color: #444444;">We enter solitude, in which also we lose loneliness… True solitude is found in the wild places, where one is without human obligation. One’s inner voices become audible. One feels the attraction of one’s most intimate sources. In consequence, one responds more clearly to other lives. The more coherent one becomes within oneself as a creature, the more fully one enters into the communion of all creatures.</span></i><div>
<span style="color: #444444;"><i><br /></i></span> -Wendell Berry, from <a href="http://www.amazon.com/What-Are-People-Wendell-Berry/dp/1582434875"><i><span style="color: blue;">What Are People For?</span></i></a><div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-H2Xgy3ccFF0/V0YxzZuek5I/AAAAAAAACfY/M1c74BTfwU8QhlXD-3k1ShbTBroH2TtPwCK4B/s1600/IMG_5983.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://4.bp.blogspot.com/-H2Xgy3ccFF0/V0YxzZuek5I/AAAAAAAACfY/M1c74BTfwU8QhlXD-3k1ShbTBroH2TtPwCK4B/s400/IMG_5983.JPG" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-1gguJW5e3wM/V0Xtds0zOAI/AAAAAAAACfE/yLbZi5M9ncgycAgk0hVKwlEhLGMukR29gCK4B/s1600/IMG_5995.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://1.bp.blogspot.com/-1gguJW5e3wM/V0Xtds0zOAI/AAAAAAAACfE/yLbZi5M9ncgycAgk0hVKwlEhLGMukR29gCK4B/s400/IMG_5995.JPG" width="300" /></a></div>
Soren recently learned to pump on a swing. Whereas he used to drag me out in the rain to push him on our background swing (groan), now he signs the word for "go" so that I leave him on the swing alone. Yesterday he was out there for an hour or more, alone, just swinging, as high as he could. When I lured him back inside with a snack, he was so calm and so happy.<br />
<br />
I'll admit I felt a little guilty. That's a lot of time left alone for a little guy who needs me to engage him, isn't it? I should be interacting with him, or he should be interacting with me, right? We should be doing something substantive, like playing with Play-Doh (fine motor skills!) while I'm modeling commenting via the iPad (communication skills!).<br />
<div>
<br /></div>
<div>
But all that time alone was actually kind of nice for me, too. I had a leisurely glass of wine. I listened to the radio. I puttered in the kitchen. And when Soren finally came inside and I saw his calm smile, I realized he had needed that time alone, doing one of his favorite things. Now he was ready to be with me.<br />
<br />
He and I, we share this inner pull, this need to be alone to recharge. Our need for excitement and activity is pretty low. So his being out there, alone (don't worry--yard is safely fenced and secured <a href="http://givemeanap.blogspot.com/2015/10/when-soren-went-missing.html"><span style="color: blue;">now</span></a>)--it's a good thing, for both of us. Maybe swinging is going to be his after-school thing, or what he goes to when he's inconsolable. I'm beginning to see how this time away from each other is what allows the two of us to later enter into peaceful interaction. After the solitude break, we are ready to really connect, whether that's playing together or just happily being in the same room.<br />
<br />
There's a stereotype that autistic people are locked in the own world--that they like it that way and must be lured out of their isolation for their own good. But more and more, I see purpose in Soren's alone time. His private swinging is not avoiding people or wasted time; he's recalibrating himself so that he can engage with the world. Soren and his swinging are a great reminder for me that we all need time to be alone doing what we love so that we can be our best selves with one another. </div>
</div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com4tag:blogger.com,1999:blog-7102626510050210252.post-36566876147552975872016-03-09T16:47:00.000-08:002016-03-09T16:47:12.941-08:00The physicality of my motherhood<div class="MsoNormal">
My motherhood is a physical one. That physicality is how I get Soren to
school –stuffing limbs in clothes, forced tooth- and hair-brushing, holding hands as we walk to the school bus. It’s
about a lot of pushing and pulling and scrubbing while we do showers and
toileting. It’s how he has fun (twirling, jumping, swinging, flapping). He prefers
that I lie down right next to him as he tries to go
to sleep. And above all, it’s how he experiences love and attachment to others.
Being held upside by his dad is his idea of bliss. Physicality is how he
experiences his world, and how I enter into it.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Unlike other moms who mourn what will eventually come as
their children mature, my expectation is that I will have this physicality for a
long time—maybe always--as I parent Soren. Simple requests like “get your socks
on” or “put your dish in the sink” don’t happen without my modeling and following
through, which means starting the sock-putting-on routine with my hands, and walking him to
the kitchen and putting that dish in the sink, hand over hand, so that we have
follow-through and consistency in his chores. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I don’t see this changing much as Soren develops. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My body is telling me that this is a lot of work. I had to
explain this situation to a physical therapist this week when he asked how my TFL/hip pain is
impacting my daily life. How does it NOT impact my daily life? Right now, my
body is essential to Soren’s functioning and happiness.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You know what’s great about physicality with your child,
though? It’s a tool that always available. Roughhousing with Soren, swimming
with him, and tickling him are ways that are quick and easy to make him feel
loved and important. I can help others relate to him by sharing these
connection secrets, too.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t have to mourn losing this physicality, which isn't going away. <i style="mso-bidi-font-style: normal;">And</i> I do mourn the fact that it may
never go away, even as we both age.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember my mom telling me when Soren was an infant that
it was a gift to have such a close relationship to a baby because of the new,
or re-introduced, world of physical connection. You are constantly touching and
handling that baby, and that changes you. You learn how much your touch is a
comfort, a constant, a way to keep that kiddo alive.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<!--[if gte mso 9]><xml>
<o:OfficeDocumentSettings>
<o:AllowPNG/>
<o:PixelsPerInch>96</o:PixelsPerInch>
</o:OfficeDocumentSettings>
</xml><![endif]-->
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>X-NONE</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:EnableOpenTypeKerning/>
<w:DontFlipMirrorIndents/>
<w:OverrideTableStyleHps/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="false"
DefSemiHidden="false" DefQFormat="false" DefPriority="99"
LatentStyleCount="380">
<w:LsdException Locked="false" Priority="0" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index 9"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" Name="toc 9"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="footnote text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="header"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="footer"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index heading"/>
<w:LsdException Locked="false" Priority="35" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="table of figures"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="envelope address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="envelope return"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="footnote reference"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation reference"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="line number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="page number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="endnote reference"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="endnote text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="table of authorities"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="macro"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="toa heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 5"/>
<w:LsdException Locked="false" Priority="10" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Closing"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Signature"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="true"
UnhideWhenUsed="true" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Message Header"/>
<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Salutation"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Date"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Block Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Document Map"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Bottom of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Definition"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Sample"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Variable"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Table"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation subject"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Contemporary"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Professional"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Balloon Text"/>
<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Theme"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 9"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="List Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="List Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 6"/>
</w:LatentStyles>
</xml><![endif]-->
<!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin:0in;
mso-para-margin-bottom:.0001pt;
mso-pagination:widow-orphan;
font-size:12.0pt;
font-family:Calibri;
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;}
</style>
<![endif]-->
<!--StartFragment-->
<!--EndFragment--><br />
<div class="MsoNormal">
So as I chase my 8-year-old around the kitchen or give him
even more foot squeezes, I’m in this gray space. Of being concerned, and of
being thankful. I have a gift that most parents of 8-year-old boys don’t: of being
connected, daily, to this being in a most intimate way. It's true that I don’t know how I’m
going to do this when Soren is 12, or 16, or 30. But for today, he is the boy
that I tickle. A lot.<o:p></o:p></div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com2tag:blogger.com,1999:blog-7102626510050210252.post-35958920238863462552015-10-21T17:38:00.001-07:002015-10-21T17:43:04.130-07:00When Soren went missingLast month I joined the club that so many parents of autistic children belong to. Soren went missing from our backyard. A side gate was left open by an irrigation worker. In a matter of maybe two minutes, I realized it was too quiet outside, that the gate was open, that Soren was missing. With his blue scooter.<br />
<br />
It lasted an hour.<br />
<br />
I had to call my husband to tell him "Soren is missing." Let that sink in. Let that guilt percolate. How do you tell a father that you let his kid go missing? Yeah.<br />
<br />
I called 911. They had to search our house, peeking in all the closets. I had to explain his disability in detail. No sirens or flashing lights, please. They quietly rallied their officers, even the parking enforcement folks. Silently. Everybody searched so quietly. Like Soren.<br />
<br />
The neighbors wandered outside to see why there was a barefoot and distraught mom pacing. Even in frosty Seattle, they rallied.<br />
<br />
The neighbors found my son. They found him. Alive alive alive alive.<br />
<br />
He was wading in the waters of Green Lake, two blocks and a busy street away from our house. Drenched and happy.<br />
<br />
He had ridden his scooter up the hill, probably to where we practice ordering hot chocolate with his iPad. He had crossed an incredibly busy street at rush hour. He was in the water and can't really swim.<br />
<br />
He was alone. I'm not sure if he was lost.<br />
<br />
<span style="color: #444444;"><i>What if</i>.</span> Indulge me while I spell out what goes through a mom's head: What if he's hit by a car. What if he drowned. What if he's hiding. What if he's scared. What if someone picked him up. What if he's terrified. What if he's dead.<br />
<br />
And then odd thoughts that I'm embarrassed to remember now: Well, it finally happened. I can't believe I'm not wearing a bra let alone shoes. Should I sit down or stand up? Why am I so calm? What is wrong with me? I should be screaming. What should I do? Please someone, tell me what to do. I need a script. Like Soren.<br />
<br />
I self-medicated that night. I just didn't want to sit with the what-ifs anymore. And the truth was that I had been through this scenario in my head. Erik and I had both imagined this situation multiple times before. Almost like we were waiting for when it would happen. Our worst fear fulfilled.<br />
<br />
You know the stats, right?<br />
<br />
<ul>
<li>Drowning is among the leading causes of death of individuals with autism.</li>
<li>Roughly half of children with autism attempt to "elope" from a safe environment, a rate almost four times higher than their typical siblings.</li>
<li>In 2009-2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism ages 14 and younger subsequent to wandering/elopement. Of those deaths, 68% were from drowning in a nearby pond, lake, creek, or river. </li>
<li>Two in three parents of elopers reported their missing children had a “close call” with a traffic injury.</li>
<li>32% of parents reported a “close call” with a possible drowning.</li>
<li>Children with autism are eight times more likely to elope between the ages of 7 and 10 than their typically developing siblings.</li>
<li>Half of all children with autism will run away and potentially go missing at least once before their 17th birthday.</li>
</ul>
<br />
I knew these stats. I sucked them in after every news story of an autistic child gone missing and almost always found dead in the nearby water. To be honest, in that hour that Soren was gone, I felt a nauseating resignation that our fate had already been decided, and this was just our time.<br />
<div>
<br /></div>
<div>
--</div>
<div>
<br /></div>
<div>
After we knew he he was safe and found, but before Erik brought him home, a police officer asked how I was going to address the situation with Soren. What? What a weird question. But I get it now. Was I going to punish him? And no. The answer is no. We talked about it with Soren, but we didn't make what he did sound scary or naughty. He's curious. He didn't do this to be defiant. He did it because the situation availed itself. So we stressed how when he wants to go to the lake, or on a walk (or anywhere, dear God), he needs to ask us.<br />
<ul style="background: rgb(255, 255, 255); border: 0px; color: #525252; font-family: 'Droid Sans', Arial, sans-serif; font-size: 12px; line-height: 20px; margin: 0px; outline: 0px; padding: 10px 0px 10px 20px; vertical-align: baseline;">
</ul>
<div>
Then we will go. Together. Please God, together.</div>
</div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com2tag:blogger.com,1999:blog-7102626510050210252.post-8495307653859601022015-06-17T18:04:00.001-07:002015-06-17T18:04:27.216-07:00Five years on<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-yvYpG97YHwc/VYIVZx901BI/AAAAAAAACUQ/MzLuppdiiZ0/s1600/IMG00008-20100704-1124_1024.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://4.bp.blogspot.com/-yvYpG97YHwc/VYIVZx901BI/AAAAAAAACUQ/MzLuppdiiZ0/s400/IMG00008-20100704-1124_1024.jpg" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Soren, almost three</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-qQ4fUEWJBM0/VYIV20CswCI/AAAAAAAACUY/dj2OinN8fKs/s1600/IMG_4943.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-qQ4fUEWJBM0/VYIV20CswCI/AAAAAAAACUY/dj2OinN8fKs/s400/IMG_4943.JPG" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Soren, almost eight</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
The inklings started five years ago, around this time. Something wasn't quite typical with our almost-three-year-old. At first it was just a mild speech delay, detected by a preschool teacher. He went to the local birth-to-three clinic. They ruled out autism and intellectual disability. But it was more than the speech. I knew.<br />
<br />
The signs increased quickly, a new or exaggerated "symptom" every week. The occasional babbling instead of speaking. Driving his toy lawnmower in circles, over and over. So much less talking than his peers. And no pretend play.<br />
<br />
It's so lonely to be suspicious that something is off but to be told by doctors and therapists--I'm talking multiple doctors and specialists--that there's nothing really wrong.<br />
<br />
At a certain point, while watching my almost-three-year-old kid tear out the pages from most of his books, I knew. It was autism.<br />
<br />
Now his behavior matched almost everything about autism that I googled. While he played outside, I collapsed on the kitchen floor, wailing. It was the grief, the betrayal, the anger. The horrible realization that one of my greatest fears of parenting was coming to be. The overwhelming sadness. <span style="background-color: white;">My whole world colored gray.</span><br />
<br />
I remember literally pounding on Erik's chest on one of those early days, sobbing that "I don't know where to put all this pain." Those words just fell out. I still don't know what that phrase means. I suspect that the pain felt so great that my whole body and mind couldn't contain it all. It was overflowing, and I didn't know how to function when all I felt was pain spewing out.<br />
<div>
<br /></div>
We've come so, so far, both Soren and I. But when I remember this autism journey, it is remembering what changed in <i><span style="color: #444444;">my</span></i> life. That's self-centered, I know. But I think it's so vital that this message get communicated to parents of newly diagnosed children: This is a journey, an evolution, for you, too.<br />
<br />
I know it's controversial in the autism community to talk about the grief that parents of autistic people feel, especially upon diagnosis of their child. It can cast the child as a tragedy, and it makes the story <span style="text-align: center;">about the parents' grief rather than about the child's reality and humanity. But this is my story. I need to be able to tell you, the parent, that you will feel awful because this is new and scary and so very much not what you envisioned. And I need to be able to tell you that there will be healing. You will find joy. </span><br />
<br />
Our life now is calmer. I'm not panicked about how many dozens of hours of enriching therapy Soren is or is not getting every week. I'm confident that we can take breaks from all that work, since simply having fun is pretty darn therapeutic.<br />
<br />
I no longer hate autism. I may hate some of its impacts, like anxiety and sleep theft and crazy GI stuff, but I'm realizing that this is who my child is, not what he has. I love that I can tell when Soren is deliriously happy because he jumps and giggles in a way that's uniquely his. That quirk is part of who he is.<br />
<br />
And I'm out of shits to give about looking odd to strangers or breaking all the Parenting Rules. (And really, that freedom is a gift that I wasn't expecting.)<br />
<br />
So for you parents just stepping on this path, this is for you. I want you to tuck this list in a safe place for when you're done sobbing and ready for just a little peace.<br />
<ul>
<li>You will feel better. You will. I promise.</li>
<li>You will change. You will be both softened and hardened. You will have an incredible new empathy and lack of judgment--of differences, of parenting styles, of people in general. And you will understand what "mama bear" really means as you advocate and fight for what's right for your child.</li>
<li>You will lose yourself for a bit. Oh, honey, probably for years at first, as you hurry up and schedule therapies, deal with school districts, and address challenging behaviors that you keep secret.</li>
<li>You will come back to yourself. You will reach back to what is good and important <i><span style="color: #444444;">to you</span></i>, to a revised self probably, but you will be able to think of things other than autism. The world will gain color.</li>
<li>Your child will still be there, waiting and wanting to be loved, as only you the parent can. The diagnosis rocked your world, but it didn't rock his or hers. </li>
</ul>
Oh, this journey. I have never been so wrecked. I have never had to rebuild myself so much. And I am whole now. You need to know that.<br />
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com3tag:blogger.com,1999:blog-7102626510050210252.post-58367781816108983682015-05-18T19:02:00.000-07:002015-05-18T19:02:56.073-07:00A trip to Paris<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-QHjo6GENH14/VVqJuEwWemI/AAAAAAAACPo/V_3Q4S1zfYk/s1600/IMG_4519.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://4.bp.blogspot.com/-QHjo6GENH14/VVqJuEwWemI/AAAAAAAACPo/V_3Q4S1zfYk/s640/IMG_4519.jpg" width="480" /></a></div>
<div style="text-align: center;">
"When spring comes to Paris the humblest mortal alive must feel that he dwells in paradise."</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
--Henry Miller, <i><span style="color: #444444;">Tropic of Cancer</span></i></div>
<div>
<i><br /></i></div>
<div>
I had the amazing privilege to go travel (alone!) to Paris earlier this month. My first time. It was such a treat to finally be in this city, where I could see Art at every turn, eat heavenly food, nap every day (you know that detail had to be in the list), drink wine with lunch, wander alone, shop for unmentionables, meet amazing new friends, and really notice the tiniest details. I felt twenty again (in only the best ways).<br />
<br />
To make the trip even sweeter, when I got back, Soren greeted me with long stares and smiles, as if he couldn't believe that I was really home.<br />
<br />
All of this made the trip a gift that I will never forget. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-8L_e8D6FoPc/VVqWvE9yeGI/AAAAAAAACQc/-sEvM5UfJQw/s1600/IMG_4822.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://4.bp.blogspot.com/-8L_e8D6FoPc/VVqWvE9yeGI/AAAAAAAACQc/-sEvM5UfJQw/s400/IMG_4822.JPG" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-dVl_4SO-7lI/VVqYEluxKsI/AAAAAAAACRg/Zxh7F7LxHak/s1600/IMG_4610.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-dVl_4SO-7lI/VVqYEluxKsI/AAAAAAAACRg/Zxh7F7LxHak/s320/IMG_4610.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-rer9bCH-XV4/VVqYE25DxuI/AAAAAAAACRo/bkI2r8iix_8/s1600/IMG_4745.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-rer9bCH-XV4/VVqYE25DxuI/AAAAAAAACRo/bkI2r8iix_8/s400/IMG_4745.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-hE64jqg06pE/VVqYEoY52qI/AAAAAAAACRk/p-5IZhyCRUo/s1600/IMG_4763.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-hE64jqg06pE/VVqYEoY52qI/AAAAAAAACRk/p-5IZhyCRUo/s400/IMG_4763.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-jSebeNFNaT4/VVqYFWCvdDI/AAAAAAAACRs/H7z7aEVQF5c/s1600/IMG_4807.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-jSebeNFNaT4/VVqYFWCvdDI/AAAAAAAACRs/H7z7aEVQF5c/s320/IMG_4807.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-0IZsQRftcLA/VVqYGP4JKKI/AAAAAAAACSA/b0FoOvtOo-g/s1600/IMG_4818.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-0IZsQRftcLA/VVqYGP4JKKI/AAAAAAAACSA/b0FoOvtOo-g/s400/IMG_4818.jpg" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-R2gIOrC4fuM/VVqXRLuhC_I/AAAAAAAACRA/H9QK0zXhdAg/s1600/IMG_4729.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-R2gIOrC4fuM/VVqXRLuhC_I/AAAAAAAACRA/H9QK0zXhdAg/s400/IMG_4729.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-xhdBi4ByNDQ/VVqWuyNCAbI/AAAAAAAACQY/1pOF-7EZQpM/s1600/IMG_4837.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://3.bp.blogspot.com/-xhdBi4ByNDQ/VVqWuyNCAbI/AAAAAAAACQY/1pOF-7EZQpM/s400/IMG_4837.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-OC05dj-UkX0/VVqWuuqRqII/AAAAAAAACQU/Dd5oynez3EQ/s1600/IMG_4840.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-OC05dj-UkX0/VVqWuuqRqII/AAAAAAAACQU/Dd5oynez3EQ/s400/IMG_4840.JPG" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-rqooxtcBcnI/VVqW86pkrOI/AAAAAAAACQs/A4r4jfQMYhw/s1600/IMG_4687.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-rqooxtcBcnI/VVqW86pkrOI/AAAAAAAACQs/A4r4jfQMYhw/s400/IMG_4687.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-nvYQFszCsJQ/VVqW9BDtzjI/AAAAAAAACQw/4B4O3lsqL4M/s1600/IMG_4697.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://3.bp.blogspot.com/-nvYQFszCsJQ/VVqW9BDtzjI/AAAAAAAACQw/4B4O3lsqL4M/s400/IMG_4697.JPG" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-5F-LbnYk818/VVqXRDWdhzI/AAAAAAAACRE/e2l6pJROaZU/s1600/IMG_4585.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-5F-LbnYk818/VVqXRDWdhzI/AAAAAAAACRE/e2l6pJROaZU/s400/IMG_4585.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-IwLS6Htwa2c/VVqXRJ24AxI/AAAAAAAACQ8/YyA9XahslKs/s1600/IMG_4714.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://2.bp.blogspot.com/-IwLS6Htwa2c/VVqXRJ24AxI/AAAAAAAACQ8/YyA9XahslKs/s400/IMG_4714.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-6SUgyKQqvck/VVqXSRQZunI/AAAAAAAACRU/2zBXcBaKsu8/s1600/IMG_4735.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-6SUgyKQqvck/VVqXSRQZunI/AAAAAAAACRU/2zBXcBaKsu8/s400/IMG_4735.jpg" width="300" /></a></div>
<div style="text-align: center;">
<br /></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-aBXWnGR2ixI/VVqJ6TMC4-I/AAAAAAAACP8/mHo5ngQm-tw/s1600/IMG_4832.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://1.bp.blogspot.com/-aBXWnGR2ixI/VVqJ6TMC4-I/AAAAAAAACP8/mHo5ngQm-tw/s400/IMG_4832.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br /></div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-55673313646603998112015-04-13T12:59:00.001-07:002015-04-13T17:47:08.044-07:00Why I don't wish that Soren would speak<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-PcXixD_Y2uQ/VSwbBr-486I/AAAAAAAACOE/V3qt0SgGXQw/s1600/FullSizeRender.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" src="http://1.bp.blogspot.com/-PcXixD_Y2uQ/VSwbBr-486I/AAAAAAAACOE/V3qt0SgGXQw/s1600/FullSizeRender.jpg" height="366" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
Some friends and relatives are confused when I say I don't wish that Soren would speak. I have to check myself that I'm not coping by denying my feelings on this issue, but no, I feel at peace with his not speaking.<br />
<br />
I do, however, hope that he develops a robust way to communicate.<br />
<br />
That distinction has been on my mind lately. I've used the words <i><span style="color: #444444;">wish</span></i> and <i><span style="color: #444444;">hope</span></i> with purpose here, because those two words can convey a lot about my reasoning when it comes to Soren's communication.<br />
<br />
To <i><span style="color: #444444;">wish</span></i> is to want something different from reality. Wished-for things are often impossible, or at least unlikely. They indicate something that's not the way things are. <i><span style="color: #444444;">I wish I could play the drums. I wish I could be a tennis ace. I wish I had paid more attention in college.</span></i> (Those statements are all true, by the way.) But they express situations that can't happen, either because they are in the past or because, knowing my skills, they will never happen. (Wishing requires me to remember those lectures about the subjunctive mood--the ones in college that apparently I slept through.)<br />
<br />
But <i><span style="color: #444444;">hope</span></i>--hope is something I can get behind. Hope is a positive. It's about the future, and it indicates something I intend to do, if it's at all possible. It's something that could happen if I get all my ducks in a row.<br />
<br />
And that's where Soren's language comes in. Perhaps I do wish he hadn't stopped talking, especially on my bad days. But that's a futile exercise. That's the past, it's unclear why it occurred, and no one knows how to bring that language back. But I do hope that Soren expands his communication skills on the iPad. And hoping for that makes me feel optimistic, not sad.<br />
<br />
And I think that's why distinguishing <i><span style="color: #444444;">wishing</span></i> and <i><span style="color: #444444;">hoping</span></i> is revealing to me. To wish that Soren would still speak is a selfish one. It's about me, my grief, my ease of moving through life with him, my clinging to the past. But a hope that he progresses in communication is about him. I want him to be able to tell people what he wants, but also what he thinks and how he feels. And this may just be possible, with the right supports (and technology).<br />
<br />
I want Soren to be able to tell us when he's mad. I want him to type, to e-mail, if ever so simply. <i><span style="color: #444444;">For his sake</span>. </i>This may take ten, twenty years, but I do still think it's possible.<br />
<br />
I hope that Soren develops communication that serves his needs (and whims), not just communication that makes the lives of others easier. Soren is a typical seven-year-old in so many ways; I'm pretty sure that being able to say "I'm pissed at you, Mom" would be liberating for him. It would mean he doesn't have to bite his hand bloody when he is frustrated with my demands. Other kids get to say "I hate you, Mom." They are probably punished for saying so, but still, their lips can form those words. I haven't added <i><span style="color: #444444;">hate</span></i> to Soren's iPad vocabulary. Maybe I should. I'm sure <span style="color: #444444;"><i>I</i> </span>said those words at seven (and got a swift timeout, too).<br />
<br />
I dearly hope that some day Soren will form highly inappropriate sentences on his iPad. If--no, <i><span style="color: #444444;">when</span></i>--that happens, don't be surprised that I'm smiling.jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-5634672197381446832015-04-06T16:34:00.002-07:002015-04-06T16:35:41.240-07:00Mend my life<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-fH1IurkgZ4M/VSL6cJCyY6I/AAAAAAAACMg/1t58--8PNiM/s1600/IMG_1787.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-fH1IurkgZ4M/VSL6cJCyY6I/AAAAAAAACMg/1t58--8PNiM/s1600/IMG_1787.JPG" height="400" width="400" /></a></div>
<br />
This has been a tough week. I got news that a big life change that I was hoping for isn't going to happen. I feel like I'm flailing, trying to get a grip on what my future will look like without this dream. I don't know what to do next or how to fill the hole that the dream had occupied. (Oh my, that sounded particularly melodramatic. It's kind of my theme this week.)<br />
<br />
By chance, this poem appeared in some newsfeed or timeline of mine this week. I had read this poem before, but it seems to be especially relevant this week. I can't stop reading it.<br />
<br />
The Journey<br />
by Mary Oliver<br />
<br />
One day you finally knew <br />
what you had to do, and began,<br />
though the voices around you<br />
kept shouting<br />
their bad advice—<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
though the whole house<br />
began to tremble<br />
and you felt the old tug<br />
at your ankles.<br />
"Mend my life!"<br />
each voice cried.<br />
But you didn't stop.<br />
You knew what you had to do,<br />
though the wind pried<br />
with its stiff fingers<br />
at the very foundations,<br />
though their melancholy<br />
was terrible.<br />
It was already late<br />
enough, and a wild night,<br />
and the road full of fallen<br />
branches and stones.<br />
But little by little,<br />
as you left their voices behind,<br />
the stars began to burn<br />
through the sheets of clouds,<br />
and there was a new voice<br />
which you slowly<br />
recognized as your own,<br />
that kept you company<br />
as you strode deeper and deeper<br />
into the world<br />
determined to do<br />
the only thing you could do—<br />
determined to save<br />
the only life you could save.jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com1tag:blogger.com,1999:blog-7102626510050210252.post-2107538682013299732014-11-13T18:05:00.001-08:002014-11-13T18:05:44.400-08:00My Greenlake in November<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-vv6ZBfdFZF8/VGVh_NdPHzI/AAAAAAAACIs/fryMfxKPgTU/s1600/Photo%2BNov%2B13%2C%2B11%2B46%2B26%2BAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="300" src="https://3.bp.blogspot.com/-vv6ZBfdFZF8/VGVh_NdPHzI/AAAAAAAACIs/fryMfxKPgTU/s400/Photo%2BNov%2B13%2C%2B11%2B46%2B26%2BAM.jpg" width="400" /></a></div>
<br />
<i><span style="color: #444444;">At no other time (than autumn) does the earth let itself be inhaled in one smell, the ripe earth; in a smell that is in no way inferior to the smell of the sea, bitter where it borders on taste, and more honeysweet where you feel it touching the first sounds. Containing depth within itself, darkness, something of the grave almost and yet again wind; tar and turpentine and Ceylon tea. Serious and lowly like the smell of a begging monk and yet again hearty and resinous like precious incense.</span></i><br /><br />― Rainer Maria Rilke, <i><span style="color: #444444;">Letters on Cézanne</span></i><div>
<span style="color: #444444;"><i><br /></i></span><div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-UUzaB8nvloA/VGVh9YcM-UI/AAAAAAAACIU/xxLoR5B_aIM/s1600/Photo%2BNov%2B07%2C%2B11%2B35%2B49%2BAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://4.bp.blogspot.com/-UUzaB8nvloA/VGVh9YcM-UI/AAAAAAAACIU/xxLoR5B_aIM/s400/Photo%2BNov%2B07%2C%2B11%2B35%2B49%2BAM.jpg" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-BBqdcNAWgTw/VGVh-M-BU8I/AAAAAAAACIc/Yyp4DkgVSMk/s1600/Photo%2BNov%2B13%2C%2B11%2B43%2B33%2BAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://1.bp.blogspot.com/-BBqdcNAWgTw/VGVh-M-BU8I/AAAAAAAACIc/Yyp4DkgVSMk/s400/Photo%2BNov%2B13%2C%2B11%2B43%2B33%2BAM.jpg" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-Zvboe0eFLcg/VGVh9laPttI/AAAAAAAACIY/R1pY3UhLh8Y/s1600/Photo%2BNov%2B13%2C%2B11%2B45%2B44%2BAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://4.bp.blogspot.com/-Zvboe0eFLcg/VGVh9laPttI/AAAAAAAACIY/R1pY3UhLh8Y/s400/Photo%2BNov%2B13%2C%2B11%2B45%2B44%2BAM.jpg" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-bGSUApoQAPs/VGViAp-LV2I/AAAAAAAACI0/KSOguNqreW0/s1600/Photo%2BNov%2B13%2C%2B11%2B47%2B01%2BAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://1.bp.blogspot.com/-bGSUApoQAPs/VGViAp-LV2I/AAAAAAAACI0/KSOguNqreW0/s400/Photo%2BNov%2B13%2C%2B11%2B47%2B01%2BAM.jpg" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-JdTTllVwIcE/VGViAmjog1I/AAAAAAAACI4/dI5oouFa50E/s1600/Photo%2BNov%2B13%2C%2B11%2B48%2B35%2BAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://1.bp.blogspot.com/-JdTTllVwIcE/VGViAmjog1I/AAAAAAAACI4/dI5oouFa50E/s400/Photo%2BNov%2B13%2C%2B11%2B48%2B35%2BAM.jpg" width="300" /></a></div>
<br /></div>
</div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com1tag:blogger.com,1999:blog-7102626510050210252.post-24120666809505879342014-11-03T17:23:00.002-08:002014-11-03T17:23:22.925-08:00pumpkin<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-WqdTO74rgH4/VFgnxj_g7LI/AAAAAAAACHM/Qr9kPOIO0JM/s1600/IMG_3709.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-WqdTO74rgH4/VFgnxj_g7LI/AAAAAAAACHM/Qr9kPOIO0JM/s1600/IMG_3709.JPG" height="640" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
We've had a full month: a pumpkin patch field trip, chest colds, school IEP meetings, lots of work travel for Erik, baseball, a halloween zebra, and the return of Seattle rain. I love this time between when school starts and when the holiday madness begins. </div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-BgcXBAUa4hs/VFgns9ACQcI/AAAAAAAACGY/NKWqocYSx-A/s1600/IMG_3595.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-BgcXBAUa4hs/VFgns9ACQcI/AAAAAAAACGY/NKWqocYSx-A/s1600/IMG_3595.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-VjFb81SV_EM/VFgnuxUXAqI/AAAAAAAACGk/mI_ucg7Bwho/s1600/IMG_3612.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-VjFb81SV_EM/VFgnuxUXAqI/AAAAAAAACGk/mI_ucg7Bwho/s1600/IMG_3612.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-o-3r-tJAQao/VFgnvJC-yFI/AAAAAAAACGo/eVjtrrA-QZk/s1600/IMG_3626.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-o-3r-tJAQao/VFgnvJC-yFI/AAAAAAAACGo/eVjtrrA-QZk/s1600/IMG_3626.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-Xw3WXioe4f4/VFgnvlhu6pI/AAAAAAAACGw/Rvu0tnCdBbM/s1600/IMG_3630.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-Xw3WXioe4f4/VFgnvlhu6pI/AAAAAAAACGw/Rvu0tnCdBbM/s1600/IMG_3630.jpg" height="400" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-CaSrqPa8r5g/VFgnwJZ1YYI/AAAAAAAACHI/6s6tQ0k5i_8/s1600/IMG_3637.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-CaSrqPa8r5g/VFgnwJZ1YYI/AAAAAAAACHI/6s6tQ0k5i_8/s1600/IMG_3637.jpg" height="400" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-U1gADLa07RA/VFgnwcwLebI/AAAAAAAACG8/w0rMnVdzEoY/s1600/IMG_3644.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-U1gADLa07RA/VFgnwcwLebI/AAAAAAAACG8/w0rMnVdzEoY/s1600/IMG_3644.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-MNLJOEM4pXY/VFgnw1zX1tI/AAAAAAAACHA/ekgn5-N0ljA/s1600/IMG_3674.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-MNLJOEM4pXY/VFgnw1zX1tI/AAAAAAAACHA/ekgn5-N0ljA/s1600/IMG_3674.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-ANN3FlHwJ-s/VFgnyROjHuI/AAAAAAAACHw/eUdcwp7PaFo/s1600/IMG_3715.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-ANN3FlHwJ-s/VFgnyROjHuI/AAAAAAAACHw/eUdcwp7PaFo/s1600/IMG_3715.JPG" height="300" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-9UtdOroKbBE/VFgnygQI6BI/AAAAAAAACHg/7OnxziGq7gk/s1600/IMG_3717.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-9UtdOroKbBE/VFgnygQI6BI/AAAAAAAACHg/7OnxziGq7gk/s1600/IMG_3717.JPG" height="300" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-7ai_O4fQBsY/VFgnyxL00lI/AAAAAAAACHo/OK2-ojWELT0/s1600/IMG_3738.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-7ai_O4fQBsY/VFgnyxL00lI/AAAAAAAACHo/OK2-ojWELT0/s1600/IMG_3738.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-hQ27sceJ8zg/VFgnumIuKsI/AAAAAAAACGg/GRnTAXLx2A8/s1600/IMG_3586.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-hQ27sceJ8zg/VFgnumIuKsI/AAAAAAAACGg/GRnTAXLx2A8/s1600/IMG_3586.jpg" height="400" width="300" /></a></div>
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-1741930869008218182014-10-20T11:05:00.002-07:002014-10-20T19:13:23.543-07:00His privileged life<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-3tEWw7zrqgs/VEVMQdZ_5cI/AAAAAAAACFs/NqqCY4ez5jc/s1600/IMG_3369.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-3tEWw7zrqgs/VEVMQdZ_5cI/AAAAAAAACFs/NqqCY4ez5jc/s1600/IMG_3369.jpg" height="400" width="300" /></a></div>
Here was my pre-kid parenting fantasy number 124: Erik and I would pull our elementary-aged children out of school for a year and take a work sabbatical to travel the world, simply and mindfully, to show the kids what's what in the grand scheme of things and how privileged they are. The year would be pivotal, especially to the kids, whose views of others would be profoundly changed and softened.<br />
<br />
Okay, that trip will probably never happen. Setting aside the logistical nightmare that it would be with a special-needs kid, there's the big issue that I don't think that my fantasized perspective shift would sink in for Soren intellectually. But I'm well past the stage in which I feel like Soren's life is a tragedy because I don't "get" to do the parenting bucket lists items that I had dreamed about. <span style="background-color: white;">This life is our Normal, and sometimes I forget that it's so different from everyone else's normal. And you know what? It's a life full of privilege, even, <i><span style="color: #444444;">and especially,</span></i> for Soren.</span><br />
<br />
Yes, he has profound autism, anxiety, a sleep disorder (now on hiatus!), some funky GI things, and behavior challenges. But not a day goes by that I don't remember that he has so much that makes his life and our lives with him just so easy. We don't need an (elitist and expensive?) trip around the world to understand this. It's ridiculous just how much he was just born into (and we his parents were born into). We've done nothing to deserve this. He's done nothing to deserve this. But he is privileged. And his autism just magnifies this privilege. He is:<br />
<br />
<ul>
<li><i>White</i>. African-American children tend to be diagnosed years later or are often misdiagnosed.</li>
<li><i>Male.</i> If he were a girl with autism, he probably would have been diagnosed even later, since providers know more about males with autism and therefore tend to look for those male-specific symptoms.</li>
<li><i>In a financially comfortable family.</i> We can afford treatments that aren't covered by insurance. For example, Soren's language therapy--using an iPad to communicate, which is a critical skill--doesn't get compensated by our popular insurance plan because he's "aged out" of that benefit (at seven!). </li>
<li><i>North American.</i> Most research on autism is focused on more affluent western or Asian countries. Treatment is often scarce in developing countries, and there may be a more prevalent public stigma about the disorder.</li>
<li><i>In a stable home life. </i>He's not homeless, a victim of abuse, or impacted by substance abuse. He lives with two present parents. We are all physically healthy.</li>
<li><i>Supported fully by an understanding family and community.</i> He has an extended family that gets it, and a community that (generally, at least) doesn't blame him or us for difference.</li>
<li><i>Living in an urban setting</i>. We have ready access to evidence-based autism resources. We don't have to drive an hour for therapy.</li>
</ul>
<br />
<div>
Yes, autism can be challenging for us, and for him. But I've seen what happens when you don't have this privilege that we have, and disability can be so much more impacting and even devastating. I've seen a single mom with cancer struggle to keep up with her autistic kids. I've seen parents with what is probably untreated mental illness try to manage complex behavioral outbursts and feeding disorders in their autistic kids. I've seen a little boy ceded to a state group home because his parents just couldn't handle his profound autism. I've seen so, so many kids who don't get private speech and occupational therapy, let alone enriching summer programs--kids who could really flourish if they had a little extra support. There is simply no money.<br />
<br />
<span style="background-color: white;">We are lucky, and I am increasingly disturbed by this privilege. This parenting journey is hard enough with all that we have. I grieve for the families whose lives are so much more difficult, through no fault of their own. I am furious at medical and educational systems that don't take care of our most vulnerable people. </span></div>
<div>
<br /></div>
<div>
If Soren were typical, I wonder what kinds of conversations I would have had with him about his privilege. In my fantasy parenthood scripts, I imagine that I'd regularly tell him and show him how his privilege is completely unearned. We'd have dinner conversations about what his obligation is to his community because of that privilege and the damage it has exacted. There would be weighty decisions about what school we'd choose to make sure he operates fully aware of the diversity in his own city. And then there's that trip around the world. </div>
<div>
<br /></div>
<div>
But none of this happens. Our conversation about privilege can't happen with Soren.</div>
<div>
<br /></div>
<div>
At least I don't think it can. Maybe, though, Soren is getting a message about how to treat people. About how being an Other feels. About never, ever making assumptions about a person's abilities or thoughts or feelings. Assuming best intentions. Seeing someone as an individual, not as a representative of a community.</div>
<div>
<br /></div>
<div>
I wish I could explain to him more about his fortunate and unearned place in this world. But maybe he already knows so much more than I do about privilege, expectations, and being an outsider. I continue to be humbled by how much this child teaches me about my assumptions.</div>
<div>
<br /></div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-33195443103292353542014-08-29T11:49:00.001-07:002014-08-29T15:46:40.485-07:00ComparingA child of one of my friends plays chess. He's seven.<br />
<br />
Soren's cousin paddleboards. At seven. Another cousin learned to ride a bike at two.<br />
<br />
At seven, Soren is making progress in putting on his socks. He can almost trace the letter S. He's sitting at the table to eat. And I am so proud of him.<br />
<br />
What's interesting to me about knowing these tidbits about others is that I feel absolutely no resentment or jealously. These are just facts about other kids. For some surprising reason, I don't immediately jump to comparing and contrasting other kids with Soren.<br />
<br />
Is this equanimity just growth as a special needs parent? Have I just moved along in the journey, well past grief and then comparison, to a sort of peaceful mindfulness? Perhaps. But what strikes me is that I can be this non-judgmental about Soren when this lack of comparison is so foreign to me.<br />
<br />
As long as I can remember, I have judged myself and oriented myself in comparison to other people. Other people helped me know where I stood in the world, and whether to be proud (college grades) or ashamed (high school PE) of myself. My self-image is totally wrapped up in comparison. How far off the norm am I? Once I find out, I know how to think of myself.<br />
<br />
I got good grades in high school and college. But it wasn't because I had sparks of understanding or creativity. It was because I figured out what the other students were doing for their term paper, for example, and I did just one notch better. I knew how to do that paper only by comparison. There was no passion about the subjects, just a sort of formula to do well. Is it any wonder that I remember very little about my college classes, even in my major?<br />
<br />
But with Soren, I compare him only with where he's been. There is no timetable. There are no typical developmental milestones. I've thrown these out, along with the brand-new but outgrown underwear that Soren is just not ready to use.<br />
<br />
And what fun it is to have pure joy and pride in something Soren can do. It's just about him, not about how he stacks up. He can put on his pants now! He ate a bite of chicken! He went to school without crying!<br />
<br />
Man, I wish I could experience this independent view of myself the way I view Soren. Could I give a speech, write a blog post, dress for a party without comparison? And what if this freedom allowed me to make grander life plans that I'm so hesitant to make because I don't have models of such activities?<br />
<br />
I'd love your feedback about this comparison issue. And I'm going to really work on not molding my thoughts in response to yours.<br />
<br />
<br />
<br />
<br />
<br />
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-80916534005125467062014-06-11T16:41:00.001-07:002014-06-11T19:08:52.900-07:00coffee manFor years, he trudged down our street. Tall, paunchy, and stooped, he walked like a two-year-old walks: a little too much scuffing the sidewalk, and as much side-to-side movement as forward movement. As if he was begrudgingly following his mother. But he was always alone. I couldn't say how old he was. Definitely past his 20s. But 30s? 40s? 50s, even? His idiosyncrasies made it hard to tell.<br />
<br />
He walked to get coffee. Every day. I saw him at the local coffee shop, both hands around his paper cup. I was never around when he spoke, but he must have told the barista his order. He sat in the same chair at the same table, looking at something invisible a few feet in front of him.<br />
<br />
I watched him with a disengaged bemusement, perhaps even a little disdain.<i><span style="color: #444444;"> How odd he was. How could one man walk so slowly? Was that paunch getting bigger? Was it safe to walk so near him?</span></i> I remember crossing the street to avoid getting too close to him on the sidewalk.<br />
<br />
We moved away from that area three years ago. But today I stopped in the grocery store near that neighborhood. I ordered an iced Americano at the in-store Starbucks. And then I saw him at the small set of bistro tables. The same glassy stare, the same sloped shoulders, the same gripped coffee cup.<br />
<br />
But a different flash of recognition startled me. He's now familiar to me in another way. I see it now: He is probably on the autism spectrum, perhaps with some intellectual disability. This could be a glimpse of Soren's future.<br />
<br />
I surprised myself by how different my view of him became in a split second. I wasn't filled with disdain; I felt compassion, even a weird camaraderie with him. And I felt ashamed of the way I viewed him for so many years.<br />
<br />
I'm mad at the person I was. She was judgmental and haughty and as much of a bully as any seventh-grade tormentor on the school bus.<br />
<br />
People like this, like I was, are probably all over my community--in stores, Starbucks lines, watching out their homes' picture windows. They stare, judge, maybe internally mock my Soren. They wonder if he's violent and cross to the opposite side of the street. I can feel their judgment. I pray that Soren doesn't pick up on it.<br />
<br />
And then I know there are others in our community who take the time to see us--not just the flapping, the wiggly body, the grunts of protest as we wait in lines, but the whole picture. They acknowledge us as a family that might be having a hard time navigating public spaces, or maybe as just a family that is a bit different. They may feel pity or maybe just empathy, but their first thought isn't disdain. I know that there are these kind people because once in a while I see their smiles or knowing nods. I can feel the difference; I know they see <i><span style="color: #444444;">us</span></i>, not just our quirks.<br />
<br />
<i><span style="color: #444444;">Coffee man, I'm so sorry about the old me. I see you now. You must live close to here. I bet you like coffee as much as I do. This coffee shop makes the best cup, don't you think? Man, you're tall. I have a little boy who is tall, too. Maybe he'll be as big as you some day.</span></i><br />
<br />
I left the grocery store with this plea, to no one in particular: Please, dear stranger, be bigger than I was. Be better. See our children--and the adults they will become--with gentle eyes.jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com2tag:blogger.com,1999:blog-7102626510050210252.post-3622149839789347342014-05-13T16:45:00.004-07:002014-05-13T16:45:50.986-07:00Just a snackA vignette from an after-school snack on a sunny day. Sometimes I forget to notice how beautiful this boy is.<span id="goog_5675418"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-liIpYY2jL_g/U3KsSkTUlcI/AAAAAAAAB5U/5GTU4b4n1u0/s1600/IMG_3277.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-liIpYY2jL_g/U3KsSkTUlcI/AAAAAAAAB5U/5GTU4b4n1u0/s1600/IMG_3277.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-rKANFyaHceQ/U3Ksbp1m54I/AAAAAAAAB5g/OCeIUIbUAQ0/s1600/IMG_3278.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-rKANFyaHceQ/U3Ksbp1m54I/AAAAAAAAB5g/OCeIUIbUAQ0/s1600/IMG_3278.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-5AUEgOZoMKc/U3Kse_bDECI/AAAAAAAAB6A/wXML1yrP_rw/s1600/IMG_3282.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-5AUEgOZoMKc/U3Kse_bDECI/AAAAAAAAB6A/wXML1yrP_rw/s1600/IMG_3282.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br /><div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-yfgJeKCqM7g/U3KsfuS8xHI/AAAAAAAAB6E/ZUE7iNIB8RI/s1600/IMG_3284.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-yfgJeKCqM7g/U3KsfuS8xHI/AAAAAAAAB6E/ZUE7iNIB8RI/s1600/IMG_3284.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-8IR60FNVMfc/U3KsgeyOMoI/AAAAAAAAB6c/YgJfICu_d2o/s1600/IMG_3285.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-8IR60FNVMfc/U3KsgeyOMoI/AAAAAAAAB6c/YgJfICu_d2o/s1600/IMG_3285.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/--AH6QT1tCKQ/U3KsqKtJKgI/AAAAAAAAB7w/S-Gy5gDP1EY/s1600/IMG_3289.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/--AH6QT1tCKQ/U3KsqKtJKgI/AAAAAAAAB7w/S-Gy5gDP1EY/s1600/IMG_3289.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-woTqpTVIPM0/U3Ksnb2cmFI/AAAAAAAAB7U/pQU4aVkJpd8/s1600/IMG_3295.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-woTqpTVIPM0/U3Ksnb2cmFI/AAAAAAAAB7U/pQU4aVkJpd8/s1600/IMG_3295.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-tnV6qUtw4r0/U3KsqnqI1aI/AAAAAAAAB70/42quYk061uI/s1600/IMG_3299.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-tnV6qUtw4r0/U3KsqnqI1aI/AAAAAAAAB70/42quYk061uI/s1600/IMG_3299.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-2-x3C3NjUQ0/U3KssO5MdaI/AAAAAAAAB8I/QSvnlu3AEWs/s1600/IMG_3301.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-2-x3C3NjUQ0/U3KssO5MdaI/AAAAAAAAB8I/QSvnlu3AEWs/s1600/IMG_3301.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-RRVtZCsxsxY/U3Kst3zbPSI/AAAAAAAAB8Y/4f4cUbM2Auk/s1600/IMG_3303.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-RRVtZCsxsxY/U3Kst3zbPSI/AAAAAAAAB8Y/4f4cUbM2Auk/s1600/IMG_3303.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-Qq3xTpwVtGc/U3KsuwijN_I/AAAAAAAAB8k/SwyNUy5Qmw4/s1600/IMG_3305.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-Qq3xTpwVtGc/U3KsuwijN_I/AAAAAAAAB8k/SwyNUy5Qmw4/s1600/IMG_3305.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-JhcRJ3IPiXQ/U3KswsD2w9I/AAAAAAAAB8w/Z3yX-FzxDvw/s1600/IMG_3308.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-JhcRJ3IPiXQ/U3KswsD2w9I/AAAAAAAAB8w/Z3yX-FzxDvw/s1600/IMG_3308.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-3K9_84feWUk/U3Ksxcn7vOI/AAAAAAAAB80/pHUmZSDdq_I/s1600/IMG_3309.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-3K9_84feWUk/U3Ksxcn7vOI/AAAAAAAAB80/pHUmZSDdq_I/s1600/IMG_3309.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-RjtFhW2AEOc/U3KtCscUweI/AAAAAAAAB-I/4iTqF5szzn4/s1600/IMG_3317.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-RjtFhW2AEOc/U3KtCscUweI/AAAAAAAAB-I/4iTqF5szzn4/s1600/IMG_3317.jpg" height="400" width="300" /></a></div>
<br />
<span id="goog_5675417"></span>jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com1tag:blogger.com,1999:blog-7102626510050210252.post-66472762600755003452014-05-11T15:45:00.001-07:002014-05-11T15:53:05.714-07:00Getting to solutions, insisting on the meansYears ago, when Erik and I were both working way too much, we had a messy house situation. Neither of us had the time or desire to clean in our infrequent free time. You should have seen the kitchen sink. Oh wait--we couldn't.<br />
<br />
Erik's solution: hire a cleaning person. As soon as he mentioned this, I hated the idea. Oh, it was probably because it came wrapped up with issues like gender roles, money stuff, time management. But I think the main reason the idea was offensive was because it wasn't my preferred method of achieving a clean house. I wanted us both to do the housework equally. In my mind, this would have shown the ultimate love and respect from my husband while also resulting in a clean house.<br />
<br />
In the end, we hired a cleaning person. I gave up my fantasy about a 50-50 weekend cleaning partnership because the real problem was the dirty house. It wasn't (and shouldn't have been) about my chores-as-respect hangup. Because I can't both bitch about the problem and then reject the clearest path to its solution. I can't choose the method of getting to the result if I want to claim that the result is what I'm truly seeking.<br />
<br />
This issue has cropped up again for me, this time with Soren. He's been getting floppy, resistant to my dressing him or combing his hair or brushing his teeth, and this sometimes leads him to some aggressive hair-pulling and scratching. I find myself getting so mad about this. I know that his aggressive behavior is probably about something other than his disliking me, but my gut reaction is to be hurt. I can't believe after all nurturing, dealing with bodily functions, and just general, well, <i><span style="color: #444444;">parenting</span></i>, that he can be so aggressive with me.<br />
<br />
I know that preventing the aggression is my ultimate goal. But I want Soren to feel contrite, too. I want him to feel something like regret or shame or even a little pain about consequences for pulling my hair. Again, I want to dictate the path that we take to get to the solution. And you know, that's just not fair. Because the path involving his regretting his behavior is not the path that's going to lead to eliminating that behavior. As many parents of autistic kids will tell you, the whole idea of a time-out to reflect on undesired behavior is utterly lost on their kid. (And some <a href="http://www.nytimes.com/2009/09/15/health/15mind.html?_r=0">critics</a> question the impact of time-outs in general.)<br />
<br />
Eliminating the aggressive behavior requires me to figure out why Soren is finding my managing his dressing, tooth-brushing, and hair-brushing so taxing that he responds the way he does. I have a feeling it's about control, especially of his own body, and maybe some sensory overstimulation of some sort. It's my job to figure out the cause and how to either reduce that stressor or help him gain the skills needed to deal with that stressor. My hope for him to feel crappy about hurting me should not be part of the equation. It's my fantasy, and I'd feel a great sense of resolution if it could happen this way, but that can't be part of the mix when it comes to parenting this child. And really, dictating the steps required to achieve a resolution with <i><span style="color: #444444;">any person</span></i> just isn't fair, is it? I'm learning this lesson very slowly.<br />
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-67986495566506314102014-04-25T16:19:00.001-07:002014-04-25T16:19:22.436-07:00Cabo break<div class="separator" style="clear: both; text-align: left;">
We were lucky enough to spend a week in Cabo with dear friends, their two great kids, and Lindsay, our former nanny/therapist. It was such a treat to be with fabulous travel companions who are patient, fun, and great cooks. I'd like to write a bit more about the trip, but really, it can be summed up like this:</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Erik: Swim, eat, drink</div>
<div class="separator" style="clear: both; text-align: left;">
Jenny: Sleep, eat, drink</div>
<div class="separator" style="clear: both; text-align: left;">
Soren: Swim, iPad, eat</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
And that's really all there is to tell. It was such a rejuvenating trip for all of us (aside from the flight down and the immigration line on the Cabo side, which I am willing out of my memory). What fun it is to see Soren so very happy. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-u1j6j78dZZY/U1mpl8eggSI/AAAAAAAAB3E/5fglhqz8h0k/s1600/IMG_3106.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-u1j6j78dZZY/U1mpl8eggSI/AAAAAAAAB3E/5fglhqz8h0k/s1600/IMG_3106.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">can't. stop. smiling.</span></i></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-NYu1cZYRcQA/U1mpmEnx6cI/AAAAAAAAB3Q/J6p17lOoOP8/s1600/IMG_3111.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-NYu1cZYRcQA/U1mpmEnx6cI/AAAAAAAAB3Q/J6p17lOoOP8/s1600/IMG_3111.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">Soren learned to do somersaults, even with his life jacket on.</span></i></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-zwgBOgI98Fo/U1mpm5lsAAI/AAAAAAAAB3c/XiLea49No2Q/s1600/IMG_3135.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-zwgBOgI98Fo/U1mpm5lsAAI/AAAAAAAAB3c/XiLea49No2Q/s1600/IMG_3135.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-NwJefEMMYGw/U1mpnrMWarI/AAAAAAAAB3k/Dcip3oau6RY/s1600/IMG_3137.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-NwJefEMMYGw/U1mpnrMWarI/AAAAAAAAB3k/Dcip3oau6RY/s1600/IMG_3137.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-lIKBKNZ0AV8/U1mpocLHHSI/AAAAAAAAB3w/6BJO2aB11Jk/s1600/IMG_3160.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-lIKBKNZ0AV8/U1mpocLHHSI/AAAAAAAAB3w/6BJO2aB11Jk/s1600/IMG_3160.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">The beach was a bit overwhelming. </span></i></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-h1t9Mtdchjk/U1mrmioQdyI/AAAAAAAAB4o/DatptqIEPV8/s1600/IMG_3216.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-h1t9Mtdchjk/U1mrmioQdyI/AAAAAAAAB4o/DatptqIEPV8/s1600/IMG_3216.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">And there's that whole sand-eating thing.</span></i></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-l-LJtfcC9qM/U1mopaybocI/AAAAAAAAB2k/_sodb3H3ULk/s1600/IMG_3074.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-l-LJtfcC9qM/U1mopaybocI/AAAAAAAAB2k/_sodb3H3ULk/s1600/IMG_3074.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">When you need to decompress, try an iPad under the covers.</span></i></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-Evla30Fd6yw/U1mo1iKx0pI/AAAAAAAAB3A/8qfjnHCp_4w/s1600/IMG_3244.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-Evla30Fd6yw/U1mo1iKx0pI/AAAAAAAAB3A/8qfjnHCp_4w/s1600/IMG_3244.JPG" height="177" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-c3gZX2Fj4mc/U1mo1u7sJjI/AAAAAAAAB20/Unpaad8VmR4/s1600/IMG_3245.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-c3gZX2Fj4mc/U1mo1u7sJjI/AAAAAAAAB20/Unpaad8VmR4/s1600/IMG_3245.JPG" height="260" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com1tag:blogger.com,1999:blog-7102626510050210252.post-16862493373164155042014-04-02T17:59:00.002-07:002014-04-02T17:59:19.493-07:00My take on autism awareness & acceptanceConfession: I've never understood autism awareness.<br />
<br />
Today is World Autism Awareness Day, and there are a lot of blue lights flicked on and puzzle pieces being thrown about. You may have seen blue profile pictures on your Facebook feed. But this day and this emphasis have always seemed short-sighted to me. Be aware of autism? OK, done. Lots of people know about autism. Now what?<br />
<br />
Some autistic people and their families have altered this to be a day of autism acceptance. That's better. But still something about the term "acceptance" rubs me the wrong way.<br />
<br />
On their own, without the commercial and feel-good baggage that we've tacked on to them, awareness and acceptance of autism are fine goals. But they are not enough, and I find a day dedicated to either one of them lacking and maybe even offensive. Here's why.<br />
<br />
Autism <i><span style="color: #444444;">awareness</span></i> isn't sufficient, and it probably makes little difference in the lives of <i><span style="color: #444444;">today's</span></i> autistic people and their parents. So you're aware of autism--the statistics, the symptoms, the latest news stories? Good for you. This doesn't change anything for us.<br />
<br />
I'm uncomfortable with the way Autism Speaks has co-opted this day as its most public-facing campaign because of what awareness really means to that organization. Its purpose is to make the public aware of the "public health crisis" that autism is (presumably to gain political and financial support for prevention?). Autism Speaks' Call to Action read just last year, in part:<br />
"This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future." Puh lease. Spare me the panic and the life-is-over narrative.<br />
<br />
I don't think that a so-called crisis has anything to do with current autistic children or adults as individuals. A "crisis" speaks to prevalence numbers, trends, and costs to society. Cures. Prevention. Oh, and all the prenatal ethical issues that prevention brings up. You know what I'm talking about there, don't you?<br />
<br />
I don't want or need a cure. Maybe because a cure is too late for our family, or maybe because I'm still not sure where autism ends and Soren begins. Maybe because I don't know what I would have done if I had seen an autism marker during Soren's amniocentesis. Maybe because it doesn't matter.<br />
<br />
Autism awareness wasn't started to make the public aware of your child or my child and how we can make this a more humane place for them to live. It's not about how to include autistic individuals in everyday life or how to see their unique strengths. Until recently, Autism Speaks' version of autism awareness used scare tactics ("1 in 88 can't wait!") as way to encourage funding, and that funding goes primarily toward research--future stuff, not ways we can make a difference today.<br />
<br />
So, many in our community have broadened this awareness to be <i><span style="color: #444444;">acceptance</span></i> instead. At first this seems like a great move, one focused on present autistic individuals and incorporating them into society. But is it really our place to accept them? How condescending--apparently it takes acceptance by the non-autistic world to grant a place at the table to autistic individuals. What if we had a day to accept African Americans? or female pilots? or lesbians? Do you see how this is paternalistic? Who says we get to be the ones to deem other people acceptable? How pompous.<br />
<br />
And what does acceptance mean, really, without context? Accepting the existence of someone else doesn't mean working to integrate them fully into our community. Just accepting African Americans isn't the same as ensuring they have full access to education, housing, and workplace advancement. Just accepting the existence of female pilots doesn't mean that you don't make a snide remark to your seat mate when you realize a woman is flying the plane that you're on.<br />
<br />
We need a day, an effort that goes one step beyond acceptance. I don't know what that word is, but it looks like making an effort to include autistic people in all aspects of our community life. It's making accommodations when it can make life easier for a huge part of our population. It's about making education and job opportunities a priority. It's about planning now for housing issues for autistic adults and autistic seniors.<br />
<br />
So that's why awareness and acceptance are not enough. We can do better. And here's what I do want; here's what a day dedicated to autism could emphasize, just to start:<br />
<ul>
<li>Softening of your heart. Yours. And your kids'. But it starts with you. I want you to embrace the quirk, the anxiety, the difference that you see. Actually, I'd love to see a gentleness toward all difference. And this means putting pity--for autistic individuals and their families--on the back burner so that you can see people in all their dimensions. It's fine to feel compassion about the difficulties that autistic individuals and their parents face. Yes, this road is daunting. But remember that we love our children<i><span style="color: #444444;"> as they are</span></i>, and we want you to love them that way, too.</li>
<li>Funding for and focus on special education--groundbreaking, out-of-the-box thinking about what our kids need, how they learn, and how they can be integrated into our schools. And that's what we want for all our kids, isn't it? Too often special education is driven by lawsuits or threats of them. I'd love to see school district administrations lead the way in making educating our most vulnerable children a priority. (Just so you know: In Seattle, 14%+ of public school students are eligible for special education.) </li>
<li>Funding for long-term care, occupation, and housing of our children--and as those children become adults and senior citizens. This would mean that parents don't have to worry about trusts and wills and faking that our child is destitute so he can draw from state and federal funds when he's an adult and/or when we're not longer here. </li>
<li>Respite care for parents, paid for by the state in a timely manner. (Washington's DSHS has a significant waiting list for its individual and family supports program.)</li>
<li>Reasonable wait times to get autism diagnoses. Wait times are typically 3-12 months long in the Seattle area (!).</li>
<li>Self-reflection. How are your judgments about acceptable behavior, valuable employment, and what's normal in general impacting others? </li>
</ul>
<div>
Maybe we can change this day to Autism Advocacy. Or Autism Action. That's what I'll be working for.<br />
<br />
Thanks for listening. I welcome your feedback on this issue.</div>
<br />
<br />
<span class="hwc" name="hotword" style="background-color: white; color: #333333; font-family: verdana; font-size: x-small;"><br /></span>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com4tag:blogger.com,1999:blog-7102626510050210252.post-3562680957043673372014-03-05T18:42:00.003-08:002014-03-05T19:00:34.574-08:00The group at the mall<div style="text-align: center;">
“Invisible threads are the strongest ties.” </div>
<div style="text-align: center;">
― Friedrich Nietzsche</div>
<div style="text-align: center;">
<br /></div>
I knew the moment I heard him that the boy was autistic. Was it the cadence, the sing-song quality to his voice? Did I even hear any words, or was it just babbling? I don't remember. I just know that it sounded so much like Soren. I knew in an instant.<br />
<br />
I was at the mall today (don't judge). There was a group of ten or so people: special-needs kids who were maybe 10 years old and their aides. They were having lunch in the food court of the mall. And I knew right away that this was a group like Soren will be in in a few years. Probably from a self-contained classroom, with quite a few aides and lots of happy but decidedly different kids.<br />
<br />
I'm impressed that this was the destination. It was chaotic: lots of people, stores, lights, new experiences. Way too many mall-walkers. One young man in the group really needed to pace, so his aide followed him around the perimeter of the food court, holding his hand, looking like she does this stress release with him a lot.<br />
<br />
I was shocked that I found myself staring at the group. Yep, staring. I couldn't believe it either. I can't stand it when strangers stare at Soren and me when we're in public places and maybe making a little too much unconventional noise. But I was staring in a different way--with recognition.<br />
<br />
I felt immediate camaraderie with this group, like these were my people. It's the same way I feel toward Soren's classroom peers. It's almost maternal, this affection for the kids that I see in his class every day. There's such a soft place in my heart for them; I swear I'm their favorite aunt. I wonder if this is what their teachers feel, too.<br />
<br />
Of course I stared in defensiveness, too. I was just waiting for some random mall teenager to make a snide comment. In my mind I dared someone say something or practice their best eye-roll. I was ready with a little condescending lecture (which didn't need to happen, thank goodness).<br />
<br />
And I stared out of curiosity, frankly. I was so intrigued at what Soren and his cohort will look like in a few years. Ah, so this is what a 10-year-old Soren will be like. The tics and sounds are a little more awkward, perhaps, to others. The difference is more obvious. That was a little sad to me--the fact that my child will be that much more noticeably different and subject to ridicule (or just staring). But the similarities to Soren and his peers now are striking. The kinetic energy, the sounds, the rhythm of these kids are just like Soren's. And frankly, I don't have many chances to see what older Soren will be like. So I stared. Or rather, I tried to stare without being noticed.<br />
<br />
I wondered what I would have said if one of the aides caught me staring over my Americano. Maybe "I have a kid like this too"? Nah, that sounds offensive and condescending. "I get it"? Perhaps. Or maybe just a knowing glance would have covered it. I think such softened eye contact would mean everything to me when I'm in a public place with Soren, being brave and feeling out our differences.<br />
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-85220020532785865412014-02-14T16:22:00.000-08:002014-02-14T16:22:04.455-08:00Shards of anxiety<i><span style="color: #444444;">Anxiety is love’s greatest killer. It makes others feel as you might when a drowning man holds on to you. You want to save him, but you know he will strangle you with his panic.<br /> — Anais Nin</span></i><div>
<br /></div>
<div>
For two days this week, Soren's anxiety has been rubbed raw. He's had meltdowns in the mornings like I've never seen; "meltdown" is not even the right word, since it sounds like a kid's naughty response to not getting what he wants. This is a panic attack, with deep sobs and gasps and stomping of feet. He is deeply anguished by or terrified of something, and I don't know what or why. Like his anxiety was in the past, this has come out of the blue. And he's inconsolable. He seems to want to be totally alone in his pain.</div>
<div>
<br /></div>
<div>
Here's what I'm doing wrong about it: I'm panicking. I'm going to the worst scenario. I'm assuming this will be a constant. And I am taking on his anxiety as my own. My inner dialogue goes something like:<span style="color: #444444;"> </span></div>
<div>
<span style="color: #444444;"><br /></span></div>
<div>
<i><span style="color: #444444;">i knew it would come back. so much for his easy transition to school. why can't i figure out the cause of this? i'm completely ineffective as his parent. this is awful. my heart is racing. god i feel like i'm suffocating.</span></i><span style="color: #444444;"><i> </i></span></div>
<div>
<span style="color: #444444;"><i><br /></i></span></div>
<div>
<span style="color: #444444;">I know I look shocked and stricken when he's in the midst of an attack. It's because I feel his anxiety viscerally. It's become mine. I notice I'm not breathing. And oddly, because nothing I do seems to help (and talking to Soren often exacerbates his crying), I have moments of complete dissociation. </span></div>
<div>
<span style="color: #444444;"><br /></span></div>
How do I balance empathizing deeply with his pain while not becoming enmeshed in it? How do I care for him without letting his anxiety become mine, too? Because of his challenges, I've always felt like part of my job is to speak for him, to interpret what's happening to him or what he may be thinking or feeling. Another special needs parent friend says that she feels like she is her child's executive function. It's hard to unlink ourselves enough to see where we end and our children begin. And it's so hard to work on helping Soren with his anxiety without over-empathizing. I need to remind myself that <i><span style="color: #444444;">this is not my anxiety</span></i>. I don't need to feel all the pain for him. <div>
<span style="color: #444444;"><br /></span></div>
<div>
<span style="color: #444444;">As a footnote, today was a good day with only a few minutes of quiet crying. So maybe this was just a fluke. But I'm still thinking about ways to keep my emotional health if and when this crops up again.</span></div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-31906244141905264962014-01-08T12:58:00.001-08:002014-01-08T12:58:56.886-08:00What I learned this ChristmasWe had a wonderful, busy, crazy, family-filled Christmas break. Erik and I flip-flop which family we visit for Christmas each year, and this year was my family. After a bit of a late start because of car issues, we ended up staying four nights in my hometown in Idaho. Both sisters and spouses and all the grandkids were there (6 kids 6 and under!).<br />
<br />
Overwhelm was on my mind. We overdid it with Soren at Thanksgiving. I misread his hyperactivity as joy, when I think it was a sign of overstimulation. The days after the holiday were rough for Soren, with increased aggression and a bit more crying than usual. I vowed to take better care with Soren's arousal level for Christmas, knowing that potentially it could be really overwhelming, with tons of family, no routine, lots of demands (eating with others is a big deal right now), and his parents' attention shared with cousins.<br />
<br />
But I think we did some things right, and if we missed a few things, we learned some good lessons. Here's what I'll take away:<br />
<br />
1. Staying in a hotel with a pool while visiting extended family is worth the cost. There's room service and quiet time. And a POOL. Have I mentioned that Soren loves swimming? Erik took him in the pool at least twice a day, which really helps his moods and sleep.<br />
<br />
2. I tell people I need to give Soren a break by sometimes leaving a social gathering early (which is true), but sometimes <i><span style="color: #444444;">I</span></i> need breaks, too. I'm a true introvert in that regard, so downtime helps us both recharge for more social time. I'm in charge of identifying signs of overstimulation in my child, but how often do I watch for similar signs in myself? When I've started acting ornery or sarcastic, or if I'm zoning out on conversations or relying a bit too much on that wine glass, then I know I've hit my limit and it's time to recenter with a bit of alone time. Having a gym at our hotel was a perfect refuge (and a great way to counterbalance my mom's amazing cooking).<br />
<br />
3. We are getting great about thinking outside the box for gifts for Soren. I need to continue to emphasize to everyone how loosely we define "toy" for him. For example, food is something Soren will welcome, usually way more than a traditional, age-appropriate toy. (And really, wouldn't <i><span style="color: #444444;">you</span></i> rather get a box of your favorite chocolates instead of, say, warm socks or a tool or kitchen accessory?) My sisters and sisters-in-law are fantastic at finding nontraditional gifts for Soren. For example:<br />
<ul>
<li>chattering teeth wind-up toy (a huge hit, as Soren is obsessed with teeth lately)</li>
<li>Slinky</li>
<li>squeeze toys</li>
<li>dinosaur anything (another recent obsession, perhaps because of the teeth factor)</li>
<li>a big bag of marshmallows </li>
<li>exercise "peanut" ball</li>
<li>candy canes</li>
</ul>
4. My family is a riot. Here's a shot from our sans-kids Greek-themed dinner from last week (um, we're not Greek). There were surprise costumes, a reindeer trivia contest, a Greek god trivia contest, and delicious food and retsina. We crack each other up.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-KhFPYGiWlBs/Us24Q9FueYI/AAAAAAAABzA/cI_C6RouyEg/s1600/IMG_2970.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-KhFPYGiWlBs/Us24Q9FueYI/AAAAAAAABzA/cI_C6RouyEg/s1600/IMG_2970.JPG" height="198" width="400" /></a></div>
<br />
I hope your holidays were peaceful and just a bit ridiculous.<br />
<br />
<i><span style="color: #444444;">PS: Thanks to Daniel and Dad for the great pictures while our camera acts up!</span></i><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-w8KOUhKEIXs/UsycC8KZjJI/AAAAAAAABug/drcHnvoE6VY/s1600/DSC_2382.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-w8KOUhKEIXs/UsycC8KZjJI/AAAAAAAABug/drcHnvoE6VY/s1600/DSC_2382.jpg" height="400" width="266" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">Happy boy</span></i></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-2s0rdu3PVDU/UsycLpVgnQI/AAAAAAAABxE/_AIC9s9j4ec/s1600/DSC_8906.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-2s0rdu3PVDU/UsycLpVgnQI/AAAAAAAABxE/_AIC9s9j4ec/s1600/DSC_8906.JPG" height="265" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">Helping Soren open presents, with lots of help from the 18-month-old twin cousins.</span></i></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-L_ZPh670LAg/UsydzVlOYnI/AAAAAAAAByI/2rpOBqG7xd0/s1600/DSC_2366.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-L_ZPh670LAg/UsydzVlOYnI/AAAAAAAAByI/2rpOBqG7xd0/s1600/DSC_2366.JPG" height="267" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">Erik with one of our three nephews and two nieces (on this side of the family). He's a fabulous uncle.</span></i></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-xZsyJJaMW1E/UsycHhjz82I/AAAAAAAABwE/I1KLtgSITyA/s1600/DSC_2419.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-xZsyJJaMW1E/UsycHhjz82I/AAAAAAAABwE/I1KLtgSITyA/s1600/DSC_2419.JPG" height="267" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="color: #444444;">Gosh, I love this one. Pure love.</span></i></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0tag:blogger.com,1999:blog-7102626510050210252.post-48215303005658692502013-12-18T17:51:00.001-08:002013-12-18T17:51:41.431-08:00Growth spurtsWe can't stop Soren from eating. His new breakfast of choice is two bowls of dry cereal and a large smoothie packed with banana and gobs of peanut butter. And maybe applesauce. And dry bread. Oh, and he gets a little packet of cereal as a little transition item at the start of school.<br />
<br />
I've been suspecting a growth spurt. And sure enough, his pants reveal just a bit too much of his socks. I don't have to tighten his elastic waistbands as much.<br />
<br />
And with the same momentum, Soren is showing huge leaps in development. We see this at school, in therapy, and at home. His self-management is so much better: He's able to sit and attend to tasks for longer periods of time. He is able to find activities that are calming to him, like swinging and hiding in the covers, and he seems to know when he needs to recharge. And his transitions (especially relinquishing the iPad to me) are downright smooth.<br />
<br />
His ABA therapy at home has suddenly become really productive, forcing us to create new goals for him because he's mastered so many, like recognizing numbers, matching words to pictures and words to words, and knowing pretty much every animal's name. This is after what seems like a whole year of stagnation.<br />
<br />
I was feeling pretty hopeful, like something had clicked. But then I attended Soren's reassessment meeting last week, and I started to lose my high about Soren's development. This reassessment happens every three years so that the school district can ensure that he still qualifies for the services he receives (in other words, does he still have deficits). There's a report circulated, then a meeting to discuss it. I quickly scanned the bulk of the report one night, and a few phrases jarred me:<br />
<br />
<i><span style="color: #444444;">"He tends to slump in his chair, is not aware of personal space, touches people to the point of irritating them, and moves slowly when accomplishing tasks."<br /><br />"Soren is demonstrating significant challenges performing many of the functional tasks required to be successful in the school environment."</span></i><br />
<div>
<br /></div>
These statements are not untrue. They are accurate descriptions, and their frankness ensures that Soren continues to receive a full slate of special education services.<br />
<br />
But reading them can be upsetting, even shocking. Sometimes I forget the challenges and focus on the many accomplishments (which is what I think I should do, no?). After I read the report, I questioned myself, and I found myself doubting the progress, the spurts. Did I really see them? Is there any progress? Are there just challenges here?<br />
<br />
Of course I don't want to focus only on progress. I think there's a dark corner of the autism world that is focused only on upward progress--<i>change, improvement</i>. In constantly evaluating and focusing on eliminating deficits, there's a message that we only value the autistic child when he or she is "improving." That status quo is not sufficient. I don't want Soren to think that his periods of focusing inward make him any less valuable, just as his growth spurts don't make him any more lovable. Am I getting too excited about some possible gains?<br />
<br />
So I wade my way through the report's candor, my self-doubt about what I'm seeing, and caution about valuing any growth too much. It's taken me a week to mull it all over, but I'm finally able to hold the two truths at the same time: Yes, Soren has some huge challenges that require a full slate of school services. But (and) yes, Soren is experiencing huge gains in all sorts of ways, and a bunch of us have noticed. Both statements are true. And neither one makes me value Soren any more or any less.<br />
<br />
<br />
<br />
<br />jmbhttp://www.blogger.com/profile/17068706972371471843noreply@blogger.com0