Wednesday, December 18, 2013

Growth spurts

We 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.

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.

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.

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.

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:

"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."

"Soren is demonstrating significant challenges performing many of the functional tasks required to be successful in the school environment."


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.

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?

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--change, improvement. 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?

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.




Sunday, December 1, 2013

Thanksgiving 2013

We had a mellow Thanksgiving weekend at the cabin: lots of knitting (Jenny), books on CD (Erik), and hiding under blankets (Soren). I got off kind of easy by just bringing salad and wine to the meal, which was wonderful (thanks other Jenny!). Soren even tried turkey, and he decided after dinner that indeed he loves apple pie. And I got to meet my beautiful new niece, Julia (but forgot pictures).

Soren's been out of sorts for about two days now, and I'm chalking that up to change in routine, including lots of social time and different expectations for him. He had a crying session for almost an hour today, but a little TV and then swimming with Daddy seemed to make it better. In the back of my mind, I worry that anxiety is rearing its nasty head, but I'm promising myself to see what the coming week of regular routine brings before I allow myself to get carried away with concern. Sometimes you just need a good cry, you know?

I hope your Thanksgiving was peaceful and joyful.
Almost ready (love the view of the mountains out the window)

Readjusting to lots of cousins

Pre-dinner snack

Sweet cousins and my iPad (which Soren SHARED. Without hurting anyone. Progress!)

Chilling in the bunk bed

More decompressing time

 Love. This. View.

Can you spot some of my favorite things?

Progress

Back at home, with more decompressing time after a good cry


Monday, November 25, 2013

Backyard update

We've finished remodeling our back yard area. We have no grass in the back yard, just pavers and plants (which is a great plan, by the way), but we needed a place for Soren to play. So the remodel made a compact play space for Soren, added a stairway to the top of the garage, and turned the top of the garage into a usable deck.

We really worked on safety for this structure, since Soren is a crazy climber. The roof deck has a locked gate that Soren can't scale, and the wooden slats on the main structure are narrow enough that a toe of a shoe can't fit in. The ground material is tiles made of recycled tires (no wood chips or tire chips, which end up in this guy's mouth).

Right now Soren is ignoring the little fort area, the climbing wall area, and the cargo net (you never know what will be interesting to him). But he's quite delighted with his swing. And I'm looking forward to those cocktails on the deck come, oh, July.
Tummy swinging


Locked gate to the deck area

View of the back of the house and the roof deck


Climbing thingies

So cool

 




Thursday, November 14, 2013

Standing out

Dear one,

While you were at school, I opened up the box labeled Photos this week. The really old box, duct-taped and dented. And I spent some time remembering this:

I'm the overexposed one near the left.

It takes my breath away to see just how much I stood out in photos from my junior high years in Jamaica. I remember how different I was in every way--race, language, culture--heck, even height--and how much I hated that sticking out for so long.

I remember feeling like I was always the focal point of schoolmates, random kids in the neighborhood, catcalling men on minibuses. ("'Ay, whitey." "Psst, white girl.") And at eleven or twelve, all I wanted to do was fit in, to be anonymous.

And even when we came back to the United States, I couldn't shake that compulsion to become invisible. I was so sick of being the focus of attention. I watched others like an anthropologist; I knew just what to wear, to say, to do to fit in. There was even that sophomore year when I tried to physically waste away, the better to fit in and to take up less attention and space.

What I didn't know then that I know now was that I was conflating standing out with negativity, judgment, even danger. I believed standing out was bad.

Soren, I need to confess that when you first started to display some autistic characteristics, I was so embarrassed. My discomfort with sticking out was oh-so-familiar. The stares, the double-takes, the whispers among adults. I covered for you at the playground when you were echolalic. Then I started avoiding the playground with you altogether. Your standing out was negative, a threat. Here I was again with nowhere to hide. And again, I was being judged, I thought.

Oh dear. I'm embarrassed by how much this autism journey was really about me and my baggage. Please forgive me.

Luckily, you have taught me along this journey. Slowly, the standing out stopped being such a big deal for me. Frankly, we have some other things on our plate, and whether people are looking at us and what they might be thinking are not priorities anymore. I think this acceptance started when you suffered so acutely from anxiety. Holding out for your brief spells of calm and happiness was my only priority. So what if you were flapping and babbling and prancing while I was checking your pull-up at the zoo? Who cares, when you were deliciously happy?

I can honestly say that the reactions of others just roll off my back now. I'm not angry, either. I don't want to pick fights with the ignorant strangers who stare or lecture them on autism--I just don't care. And that is such a relief (from myself).

I will always protect you from those who want to make your standing out a negative. But I also hope that you will never think that your standing out, which I believe you're aware of, is something to avoid or fear. I hope to show you that standing out isn't always coupled with judgment and embarrassment and danger. Sometimes standing out is just standing out. And your mom is just fine with both of us standing out now.







Tuesday, November 5, 2013

Talking down

I had a moment of bravery this week. I noticed a video on my iPad that was dated 2010, when Soren was two. That was before Soren regressed. I haven't been able to view any videos from then in years. It's just too painful to hear Soren speaking.

But out of curiosity and a burst of confidence, I opened the video. It was this one (and grandmas, please note that it's pretty rough one to watch):
video
(Note that the video may not appear on mobile devices.)

I watched it to the end. And I found it--well, not painful, exactly, but more fascinating.

Things that struck me:
  • Man, what complex verbal expressions that boy had. I hadn't remembered that. "Come come come, let's climb this tree, up, get the owl." Sigh.
  • What kind of Wild Kingdom voice am I using at the beginning? Groan.
  • And most importantly, I sure did speak to Soren differently then.
This last point really got to me. It's not been deliberate, but since Soren has regressed in language (and has become more inattentive, if that's the word), I think I speak to him as you would an 18-month old. I simplify sentences. I focus on actions. I rarely muse about abstract ideas. I even catch myself referring to myself in the third person ("mama's car"--geez). The video showed how I used to speak quickly, with much more information packed in sentences.

The change is in part because now I'm not receiving a lot of feedback when I talk to Soren. If I mused about an owl in the tree today, Soren may look where I'm pointing, but only with lots of prompting. He wouldn't attempt to say anything verbally, of course, and he probably wouldn't comment on his iPad that this was an owl, unless directly prompted. And when I'm not receiving feedback on what I say, it becomes a little ridiculous to keep it up. It really is like a monologue. And so I've cut back on the talking to him, and when I do talk to him, it's giving clear instructions, reviewing the day, responding to requests, prepping him for activities to come. I don't tell him what I'm feeling, what I'm expecting, the little things I'm thinking about or maybe that he's thinking about.

I assume he won't understand or won't attend to what I'm saying.

While it's true that we don't know what's changed cognitively with Soren since his language regressions (and maybe there's been cognitive regression or much slowed development), what if he hasn't changed cognitively? What if he's capable of understanding and responding to much more complex thoughts, given enough time? What if I'm talking down to him unnecessarily?

I want to presume competence. I want my language to be a way for him to be exposed to lots of communication, which can only help his. I want my language with him to be above his level, not below it. I never want to talk down to him, and God forbid, I never want him to KNOW I'm talking down to him.

After watching that video, I've resolved to start using more mature language with him even when I don't get a response. It may mean that sentences are left hanging. I need to get comfortable with these silences and lack of reciprocation. It's not about me and how that silence feels awkward or futile. It's about Soren and his wide world of language. It's expecting big things from him.

And now I think I'm going to go talk to him about the steller's jay I saw in the backyard today. Maybe I'll remind him about that owl we saw so long ago.

Friday, November 1, 2013

Halloween follow-up

We did it! We found a costume that didn't irritate Soren. It's a brown sweatsuit with masking tape detail to make a giraffe. Luckily, he didn't pick (or eat) the masking tape, so it lasted most of the day. There was a mask, too, but that was just for looking at, not wearing.

We didn't go trick-or-treating this year, but there was no lack of candy for our sugar addict. Soren was a little trooper for indulging his mama like this.

Hope your holiday was safe and fun!






Saturday, October 26, 2013

Why posed pictures are hard

This year, I signed up Soren for school pictures. And it didn't happen. I mean, not at all. His teachers were apologetic, explaining that he just couldn't handle the chaos, but honestly I was a bit relieved. I don't want to see such a picture.

My boy is beautiful, and there is nothing like capturing his smile, which crinkles his eyes up and puffs out his still-pinchable cheeks. I treasure photos of him, as you can tell from my posts on this blog. But forcing a photo of him at a certain time is difficult for both of us, on many levels.

  • A scripted photo insists on activities that are concocted and unnatural: posing, sitting still, forced eye contact (artificial eye contact with a camera, no less). All these things are hard for Soren.
  • A posed photo is difficult for me. Picture me manhandling my very large six-year-old's bottom in place among others on a couch, maybe even holding him down out of view of the camera, hoping he'll stay for five seconds. This is a dance that's awkward and hard and a contrast with the ease with which the other kids can handle a photo session without parental supervision (or force).
  • The resulting photo is often painful to see. It's an inaccurate snapshot of who my child is (normally tuned in to most people, especially cherished adults in his life). The posed photo shows him looking different, distant, set-apart. This is a tangible reminder of his difference. It's a relic that will live on, too. This isn't who he is. This is only who he is in pictures. 

I understand others' desire and expectation to have family/peer/school photos of Soren. I wish it would be feasible and easy to get them. But these shots don't show my child. They show his challenge, not his strength. Candid photos we have show so much more.

We've tolerated family pictures so far. I'm brainstorming ways to capture my kid in more natural ways even during times that we typically have group photos, like holidays and birthdays. I don't think I'll do individual school portraits any more, though. It's just not worth it.

I won't show the examples of the posed pictures we do have, for the above reasons. But here's why candids and spontaneous shots make so much sense for Soren. Can't you just sense who my child is in the following shots? These are keepers.













Wednesday, October 16, 2013

Sensory-friendly costumes

Soren doesn't understand Halloween, though we've talked about it with him and read books about it. We haven't taken him trick-or-treating, assuming that crowds of strange kids and adults in weird costumes and masks roaming his neighborhood would be scary (and come to think of it, it is a strange tradition.) That's not to say that we'd never take him to try this, but right now, it doesn't seem like something he'd enjoy (though that boy does love candy!).

But dressing him up is important to me. It's a way for us to participate in the holiday. It's a mama privilege. So I indulge. I don't think he'd get the idea of most costumes, but if the costume is right, I don't think he minds.

And that's the challenge for me as I consider costumes each year. And I imagine that there are quite a few other parents whose kids have sensory issues that limit costume choices. The costume needs to be right: no hats, makeup, gloves, masks, hoods, glasses, tails, or accessories to hold. It needs to feel like regular clothing to our kids.

Don't bother going to Target for this kind of get-up. Most ready-made costumes feature hoods or masks (and you'll find mostly commercial tie-in costumes, but that's another issue). Luckily, there are loads of ideas online that use sweat suits as a base for costumes. (Just Google "sweat suit Halloween costume.") By using a plain sweat suit and some DIY skills, we can make a costume that feels like cozy clothing.

Here are some of the ideas I've collected:
  • Skeleton: Use a black sweat suit, with white bones painted on, maybe in glow-in-the-dark paint.
  • Superhero: Use any color sweat suit and add an initial with felt or paint. You may want to add cuffs or lightning arrows, too. I used this as an inspiration for Soren's costume last year. 
  • Pumpkin: Use felt or paint to make a jack o'lantern design on an orange sweat suit.
  • Devil: Use a red sweatsuit, maybe with a little tail sewn on. No need for ears, pitchfork, etc.
  • Most animals, especially those that you can identify from their coloring instead of their head or tail detail: Dalmatian, pig, cow, and bee, for example.
  • Clown: Add felt or paint balls or stripes in primary colors to a sweat suit of any color.
  • The sun, moon, or stars: Use a black or blue sweat suit for the moon and stars, and white, yellow, or orange for the sun. Add details with paint or felt.
  • Olympic gymnast or track star: Use a white sweat suit with national colors or stripes.
  • TV or iPad: Add a big white square to a black sweat suit.
  • Sound of Music boys: Use brown or khaki shirt and shorts with painted-on suspenders.
  • Crayons: Use a colored sweat suit and add black cuffs and lettering.
This year I think we'll opt for a giraffe costume: I'll use a brown sweat suit with spots created in reverse with masking tape. There will be no antlers or tail, since Soren wouldn't tolerate those, so I hope the coloring will be obvious enough to identify this as a giraffe costume. I'll post a picture once this is done.

And just for cuteness, here are the past three years of costumes for Soren:

Penguin. When sensory challenges were not an issue.

French sailor. My favorite. The hat came off right away.

Super Soren, in the rain. He was not thrilled that day, but I don't think it was because of the costume.

If you can think of other simple clothes-based costumes, I'd love to hear about them.

Monday, October 14, 2013

Vacation to Bend

Last week we spent a glorious six days in Bend, Oregon, with my parents. We had no agenda--just time for walking, biking, hiking, hot tubbing, eating, and movie watching. Erik and I had a wonderful date night. We pulled Soren out of school to do this getaway, which was worth it (and might be considered therapy, right??). 

The only downside was the near-constant monitoring of Soren on the second-story open catwalk in the house we stayed in. He has a compulsion to climb and hang in precarious places. There was an unfortunate iPad screen incident from this perch.

Soren is in a phase of compulsive hugging and snuggling. It was really amped up with his beloved grandparents. I'm sure some expert would tell us we need to curtail that behavior, since it isn't socially acceptable with strangers. But right now, I'm eating it up. 

\
Sparks Lake area

Poor Seattle boy, a snow rookie

Well, of course you need to sample it.

En route to Mount Bachelor

 Lots of hiking/walking. 

Soren started out walking...

but really wanted to travel this way.

The colors!


Osprey nest

Some Grandpa time.

 

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