spectrum introspection

Fascinating Conversations with Blink, Episode 2,344

2010-10-09T10:18:00.000-05:00

Yesterday, Blink and I sat in the unseasonably hot sunshine, soaking it in, since we had a few moments to while away before his therapy appointment began. Blink began discussing genes and autism and the possibility that someday parents might be able to, in his words, "stop severe autism" before a child was even born. "How do you feel about that?" I asked. "I think it's pretty cool," replied. So I went a step further. "Blink, if you could choose, would you choose to have Asperger's Syndrome?"

He didn't miss a beat.

"No. If a UFO could come and suck up all of the autism in me, I would still like everything I like. But life would be a lot easier. Hey, wouldn't it be cool if a UFO came and did that? I wish it could come and take away the autism and the ADHD. Wouldn't that be crazy?"

I found this absolutely fascinating. And a little bit unexpected. I realized by his quick response that he has thought about this before. He knew where he stood on the issue.

I wonder how his feelings will change (or not) as he grows older.

The Waiting List, Part II

2010-09-08T09:57:00.000-05:00

The second installment in how we came to join the throngs on the waiting list:

Part II:

I sent Blink off to kindergarten with a cheery smile affixed to my face, a balloon of fear and hope inflating my chest, causing me to hold my breath.

We made it about a week-and-a-half into the school year before I got a call from Mrs. S., the veteran kindergarten teacher. She was calling, she said, to let me know that Blink was having a little difficulty adjusting to kindergarten and she wondered if I just might have some advice on how to cope with Blink's screaming fits.

And at that very moment, the fairy tale I had carefully constructed in my head— you know, the one in which Blink ran off to school with a smile on his face and we all lived happily ever after — crumbled into a million tiny pieces.

A month later, we had parent teacher conferences. My husband I walked into the bright, orderly kindergarten classroom and sat down on kindergarten-sized chairs, awkwardly trying to assume a composed and dignified position for making pleasantries. Chris started things off, saying, “So do you have a lot of kids like Blink who are a handful?” Mrs. S.’s eyes grew wide. Her hands fell to the table. “Oh, god, no,” she said, “No. I’ve taught kindergarten for twenty years and I’ve never had a child like Blink in my classroom.” She paused and went for the kill, uttering the words that would suck all the air out of the room for me. “It’s not normal,” she said.

I had walked into the parent-teacher conference thinking (well, hoping, for I am nothing if not an optimist) that I would hear what a brilliant child I have. Instead I heard that his screams are so chilling that other teachers have come running into the room to see what terrible emergency was transpiring. Oh, just Blink needing to transition from one activity to another. Or Blink objecting to “Funnercize.” (Though, I have to admit I was with him on that one in spirit).

And thus began the delicate dance with Mrs. S., in which she suggested we take Blink to the pediatrician, being very careful not to actually voice any specific concerns about his development, while I gently pushed back to inquire what her specific concerns were. Alas, we were both skilled dance partners, and got nowhere. So I took a deep breath, summoned up some courage and asked her in a shaky voice, “Do you think we should get the special education department involved?”

“Oh no,” Mrs. S. replied, explaining that, incredibly, nothing was interfering with Blink's academics — he was doing wonderfully with reading and math, after all. Furthermore, the behavior, the very behavior that she had just spent so much time telling me wasn’t normal, wasn’t severe enough to warrant special education involvement. She did pause to add in a foreboding note, “Expectations will get higher in first, second, and third grades. At that point, perhaps special education will be appropriate.”

Blink, blink.

I stared at this woman, not comprehending how someone could blithely tell me that yes, my son was clearly floundering in kindergarten, but no, there was nothing the school wanted to do about it. Maybe Blink just needed to fail miserably every day for a few more years before anyone would actually, oh, I don’t know, do anything about it.

And yet, under my indignation, deep down, part of me was a tad relieved. The fact that I had voiced the dreaded words “special education” and been rebuffed must mean my child was simply highly sensitive and unique, yes, unique. Perhaps he was “gifted.” He would grow out of the screaming. The gulf between his intellectual development and his social emotional development would even out on his own and soon this would be a distant memory.

Maybe.

Back to School in Three Short Snapshots

2010-09-08T08:22:00.000-05:00

Blink started a new school this year. As I've mentioned before, it's a dramatic change from his old school. He's gone from an environment dominated by students with special needs to a mainstream environment. The expectations are much higher at his new school. Here, staff tend to ask themselves, "Is this something Blink can do?" and if the answer is yes, that is the expectation. Clearly, my not-so-little monkey is dealing with a pretty Titanic-sized transition right now. So, how's it going? Here are three snapshots:

1. Blink is playing tag with other kids on the playground at recess! And, as far as I know, enjoying it immensely.

2. "There are no bullies at my new school." This statement says it all, doesn't it?

3. The wonderful autism teacher, checking in with me after a bumpy first few days, told me that Blink is a creative, funny, wonderful boy and it's her mission to make sure that everyone in the school sees that in him.

I'm happy.

The Waiting List, Part I

2010-09-07T15:03:00.001-05:00

This week, I'm going to share some writing I'm doing about the confusing, maddening, oh let's face it, terrible time period leading up to Blink's diagnosis of Asperger's Syndrome. Those of you in the trenches know what I'm referring to: the time period in which you can no longer deny that something isn't quite right, but the answers (let alone solutions) remain all too elusive.

Here's part I of the installment:

THE WAITING LIST

I came home from work one hot August day to find Katie, eternally cheerful Katie, who was our summer nanny, with a frown on her face. Having just moved back to Minneapolis from the east coast and transitioned from telecommuting from home to a nearly full-time job at the office, we had been in a bit of a child care crunch. To this day, I grow a bit uncomfortable when I say the words “our nanny” because the truth is, I’m just not the kind of person who has a nanny. But when you have a challenging/spirited/what-euphemism-should-we-insert-here kind of five-year-old as well as a one-year-old who will not nap without nursing, one’s last-minute child care options are limited.

Katie had come via word-of-mouth recommendations through the much loftier social circles my boss ran in. With an elementary education certification in hand, Katie was studying to become a Montessori teacher. She had seemingly endless patience. Patience, I’m afraid, my darling firstborn had just about exhausted on that Thursday in August that she cornered me with a frown.

With a serious face, Katie shared a laundry list of the day’s infractions. Blink had yelled at her many times, repeatedly telling her that he hated her and she was stupid. At the park, he threw pebbles at his baby sister, hitting her in the face. When Katie told him to stop, he looked her in the eye and did it again. Twice. Wisely deciding it was time to exit the park, Katie got the kids to her car. The car that Blink then hit with a stick. Stick removed, he hit Katie while she was buckling him into the car. Oh, it was bad. After each incident, I would cringe and steel myself as I realized that Katie wasn’t through yet, oh no. Apparently, my five-year-old son also refused to go use the bathroom and declared that he would simply pee in his pants instead. And did.

And on and on and on.

I do believe my son’s antics were the subject of many a dramatic story for Katie to bring out at family gatherings, always punctuated with the last line, “And that’s when I decided I would never, ever, nanny again.”

I was mortified by Katie’s somber descriptions, of course. But more chilling were her parting words. “I’m worried about how Blink is going to do in kindergarten. I’ve spent a lot of time in classrooms and I’m just really concerned about how Blink is going to cope with the expectations they will have for behavior.” I don’t recall her coming straight out and saying the words, “I am concerned about your son’s social development,” but the gravity of her warning was clear.

My eyes wide with concern, embarrassment, and fear, I nodded silently as Katie continued. “It’s not just today,” she said. “He does this kind of thing on the playground a lot. Blink always wants to play Titanic and when the other kids don’t understand his game, or don’t want to play it, he starts yelling insults.” Oh. How charming. Oh. Oh dear. I thanked Katie, apologized one more time, and ushered her out the door just before the tears started spilling down my cheeks.

Just a few weeks earlier, I had taken Blink for his five-year-old check up with our new pediatrician. He was at his charming and talkative best and Dr. Irvin turned to me and said wryly, “Clearly he has no social development problems!” I just smiled weakly, searching for a way to say, “Well, actually...” but ultimately it was so much more comfortable to sit there and pretend it was true than to tell her my concerns right in front of Blink.

With just a few weeks before kindergarten was to begin, I wasn’t sure what to make of Katie’s warnings. Kind-hearted friends counseled that Blink was a sensitive child (true), who was reacting to a cross-country move (true) and adjusting to spending more time in child care (also true). I couldn’t shake the feeling there was more at hand, but at the same time I wasn’t quite ready to face it, and honestly, I wasn’t at all clear on what “facing it” would actually entail. All I knew, deep down, was that “normal” kids didn’t act this way and I seemed to be spending an awful lot of time wringing my hands and saying things like, “I don’t know what to do.”

The only prudent course of action, it seemed to me at the time, was to hold my breath and hope kindergarten went well...

Summer Round Up

2010-08-23T20:46:00.000-05:00

In one week, Blink will be starting at his new school. At the outset of this summer, which was three times the length of previous summer breaks since the move from a year-round school program to a traditional schedule, I anticipated I would be clawing my eyeballs out and begging for mercy by the end of the summer. (Yeah, we didn't begin summer on a good note...)

But really, I'm a little wistful. It's been nice having Blink around in the background while I work (attended by our amazing PCA...he wasn't being neglected!). No doubt I am looking forward to a quiet house next week, but it has really been a great summer.

Just as I'd hoped and wished, Blink has decompressed quite a bit from the stressfest that was the end of his school year at the old school. We've worked hard to get his anxiety under control. Looking back, I see that I haven't mentioned one critical piece of the puzzle here: we started seeing a new specialist for medication management and over the past 6 weeks, we've really increased his Prozac dose. And it's helping.

Today, for instance, we were running late to get out the door in time for his social skills group. Blink had gone upstairs to get socks and gotten distracted. When he came back sock-less, I suggested (ok, maybe snapped) that he just wear his sandals. Ordinarily this would have become quite the power struggle. Today? With just a little bit of exasperation, he said, "Oh, alriiiiiiiight." I am pretty sure I stopped and blinked, myself, I was so shocked!

I'm nervous about the greater demands of mainstreaming in the school year ahead. And excited at the possibilities. I will be holding my breath for the first few weeks, to be sure.

Strategies and Teaching Moments

2010-08-12T21:57:00.000-05:00

Don't you love it when a strategy works? Tonight was Happy Hour Playdate (best invention ever) among my friends. Picture about a dozen kids running amok while adults sip drinks on the patio and nosh on delicious food. Blink is the only child over the age of 5, however, which makes for a challenging situation. He does really well with children a year or two younger, but a gaggle of his little sister's peers? That's kind of his nightmare.

The first Happy Hour Playdate, Blink had to be carried out kicking and screaming. It wasn't until he was agitated that I'd found a quiet place for him.

After that, I admit, I arranged for him to spend extra time with his father and avoided it altogether. But that wasn't possible tonight, so we had a few strategies in place.

We went over the fact that the rule is, if you have a problem you get your mother. And try to remember how young everyone is.

I had him ask the hostess if there was a quiet room he could use as his space. We brought a book and an ipod.

It totally worked! He did a great job. There were a few, um, teaching moments. Like when he wanted to ask everyone not to eat the shrimp. (As of today, he's a vegetarian?!) Or when he thought the girl who was trying to impress him was being mean and hated him. (What?! That's not how she can impress me. I have a list of things she can do to impress me. Like eating a worm. That would impress me.)

But no meltdowns! No altercations. Go Blink!

(Full disclosure: I did also let him play with my iPhone a lot more than I usually do.)

Two Conversations

2010-08-09T09:25:00.000-05:00

Two recent conversations with Blink stick in my mind.

The first was when we were on vacation and I was beyond frustrated with Blink. Out of sheer frustration, I said something like, "Sometimes it seems like you only care about other people's feelings when it directly affects you. I'm not raising you to be like that." His response? "Well I guess you are." I'm pretty sure I burst into tears at that point. I mean, what do you do? I'm haunted by it.

The second conversation was this morning. We were just chatting and Blink called me out for using imprecise language. It was rude, though I knew that wasn't his intent. We were all in good moods, so I said very calmly and evenly, "Blink, you know, that sounded kind of rude." He sighed and said, "People think everything I say is rude." I nodded and explained maybe it's not always what he says, but how he says it, adding that people like nice voices. He sighed again and said, "I just have no idea how everybody does that." So true! It was insightful.

"I know how to reign him in."

2010-07-13T12:22:00.000-05:00

The stars aligned and Blink woke up calm and happy this morning. I explained the situation and he was comfortable going by himself.

When I picked him up, I asked the teacher how he did without extra support. She smiled and said, "He did pretty good. I know how how to reign him in now. I can just tell him I'm not going to do it all for him." She's had him in classes before, which I think helped tremendously. I again felt a little pang that Blink at his best is still...definitively different, but it was clearly a success.

I got the sense that he demands a lot of attention in a group setting -- far more than his fair share -- but that he wasn't disruptive or explosive. But also that her job will be easier when our wonderful PCA is better. (Stomach flu, poor thing.)

Whew! I'm relieved.

Flying Solo?

2010-07-12T21:59:00.000-05:00

This week, Blink has morning day camp at the awesome artsy-science nonprofit in our neighborhood. He has been attending programs there, with PCA (an aide, essentially) support, for years. This summer, especially, it has gone pretty well. The main problem tends to be that Blink can get rather...enthusiastic when excited about something and he doesn't know when to stop asking questions. He also has trouble with cleaning up at the end of something.

So today started off a new weeklong camp -- Raiders of the Lost Junkyard. Today the teacher set out an array of electronics and tools and told the kids to dismantle away to find pieces they can use to build their own creations. Heavenly, right? Blink sure thought so. (He's making a sculpture of Boba Fett.)

I bring all this up because wonderful PCA just texted me to tell me she has been throwing up all night. So, tomorrow... I think I might try to send him solo. I could go and act as an aide, but I think that would be embarrassing to him. No, I know it would be. Then there's the little problem that his camp and his sister's let out at the same time. I suppose the thing to do would be to pick her up a few minutes early so we can be there if any clean-up strong-arming is needed at the end.

Wish us luck! This is uncharted territory.

Getting Unstuck.

2010-07-06T10:28:00.000-05:00

Blink came home from the long weekend at his father's in a mood. He wanted to get on the computer to look up the price of a specific Lego item and he was pretty agitated about this -- it had obviously been a source of contention with his father. I was pretty wary, too. It seems like whenever I let him get on the computer, particularly Lego. com, he gets more and more escalated.

So I said no. He got upset. I ignored. I told him, "You have a problem. Your problem is that you're stuck. I will help you with your problem when you're calm."

He got calm and tried to talk to me about it again. And here I was unsure. He was calm -- that's good! But he still wants to check it -- does this count as badgering? (yeah, I guess....) It wasn't a particularly unreasonable request on its own, to check a price.... But it was feeding obsessive behavior.

So I made him a deal. He had to not talk about it for a half hour, which would take us up through dinner time. And agree to go for a walk/scooter ride after dinner.

He agreed and held his end of the bargain. So we looked it up. And it was nowhere to be found on lego.com. I found it on Amazon for $30, which was three times more than he was expecting. I tried to help him find it on the Lego site so we could have a good idea what the baseline price was... But no dice. I was nervous, thinking this would surely push the kid over the edge.

But no. I closed the laptop and shrugged and he said, "That's weird." And we went on our walk/ride.

Three Days...

2010-07-01T22:03:00.000-05:00

The past three days, Blink has gotten more exercise than he did in the entire last month. And the number of challenging moments?

Zero.

I know, three days isn't long enough to bank on. But I'm feeling some optimism, and after this past month, hoo boy, is that a good thing.

On Independence

2010-06-30T19:49:00.000-05:00

Blink's ninth birthday was yesterday. As part of our celebrations, we went to a suburban pool for the afternoon. Actually water park would be a better descriptor. This place was off the charts. The highlight for Blink was the 4-story tall water slides. The boy whom we've been struggling to get up off the couch for months climbed four flights of stairs dozens of times. It was wonderful.

What was not wonderful (for me) was having to make snap decisions on how much independence to let Blink have. Clearly, other kids his age were navigating the park independently. Blink had the drive and the confidence to do so as well. Luckily, I was there with a friend and I was able to ask her what she thought about the situation. She encouraged me to let him have some freedom.

So I did. He asked if he could walk around by himself during a pool break while his sister and her buddies played in the sand area. I said yes but told him he needed to come find me and ask me before he got back into the water. I told him it was a test to see if he was responsible enough. He followed through! So I let him go.

Blink's not a daredevil (though he sure did enjoy the rush of the slides!) so I wasn't worried about his physical safety. The pool is not deep and there are lifeguards (attentive ones, even) everywhere. Instead, I was worried about a dispute or an altercation with another child. Luckily, that didn't happen. I'm still on the fence about whether it was a good idea. I'd hate for him to get in a fight with a three-year-old, you know? I guess we'll have some preemptive talks about the responsibility that goes along with independence.

But spectrum parents, how do you know when to let go? Is it even possible to be a helicopter parent when you have a child who is quite delayed socially/emotionally?

Blink frequently goes to the lake with his wonderful PCA and she confirmed something I have often thought: water tends to regulate him. I'm so excited about having another outlet for everyone to have fun and get some exercise. We got a season pass thanks to my mother's generosity, so I intend to go often!

P.S. When I asked Blink in passing if he wanted to do the next session of swim lessons, his answer was an unequivocal YES.

On Swimming and Growth

2010-06-29T16:15:00.001-05:00

Blink started swimming lessons a few weeks ago. Upon the advice of some trusted experts in the field, I decided to hold my breath and start him out in regular lessons at the YWCA where his sister takes hers and loves them. The teachers are great, the classes are small (3-4 kids apiece), and when I asked them if they'd worked with Aspie kids before they didn't sound scared. So the idea was to see if it worked before moving to something more private/autism-oriented.

The first lesson, Blink started out well but then stormed out of the pool and said the teacher wasn't teaching him right

His father had taken him, so I didn't have firsthand observations to go on, but I think he felt anxious and self-conscious about being bigger than the others and maybe making mistakes. He'd rather not do something at all than to try and make a mistake. Sometimes this is hard to see because he's so busy being angry and dramatic about it.

To say I was a bit worried about the second lesson would be an understatement. I decided to make a comic strip with a superhero that taught Alex "how to act at swim lessons." We read it a few times and I held my breath as he went off to the second swim lesson and I went off to an autism workshop.

At the workshop, I listened to two parents describe how their older sons on the spectrum are on the swim teams. How swimming has become a fantastic sport for them. How it's given the confidence and mentors as they enter the teen years. It was inspiring and a very timely reminder to stick with the swimming. Imagine if they'd given up after a first lesson!

Later, I learned Blink did a great job following directions at his second lesson. Whew! I hope we can keep it going.

A New Specialist to Visit, Oh Boy!

2010-06-23T16:59:00.000-05:00

I must offer my apologies for the dearth of posts lately. It's continued to be a challenging time for Blink and a time of major, multiple transitions for the entire family (more on these to come in future posts) and that's sapping my usual posting energy.

I took Blink to the pediatrician this week, because it's become increasingly clear that he's walking funny. Or to be more specific, toeing in. Blink says it "feels good" to walk this way. Hmm. He never used to do this! Is it related somehow to his lack of stamina, I wonder? Of course I first realized something was going on about a week after our OT fired us, so I didn't have someone to casually run it by. So, what the heck, to the pediatrician's we went, where Blink was charming (whew) and slightly manic in his conversations about pets. And where we received a referral to an Orthopedist and the intimation that he'll probably need some physical therapy.

So, in a month we will see what's going on. I'm not terribly worried, but I am weary at the thought of adding another specialist to our roster.

Tough Weekend

2010-06-01T10:14:00.000-05:00

I guess the good news about this weekend is that I survived it. Mostly.

Sometimes I can roll with the challenging behavior. And sometimes I can't. Sometimes the emotional armor wears thin and it gets inside me. And once that happens, it's so hard to recover. Once we both end up in tears, the floodgates are open wide.

I am burnt out.

And somehow I have to put the pieces together and figure out how to better handle him.

The Grief We Carry Arround

2010-05-25T10:58:00.008-05:00

This weekend, my partner and I were having lunch and we were chatting about a set of adorable twin boys he knows who are on the spectrum but receiving a great deal of early intervention. He predicted that these boys will be able to go off to kindergarten in two years and nobody would ever guess they have autism.

My eyes instantly flooded with tears.

I didn't even have time to think about it; the grief just washed over me.

That's not my son. Why can't that be Blink? Why us? Will everything always be difficult because we didn't figure everything out earlier? And of course... Why didn't I get him help earlier? If only...

The amazing thing for me was that when I looked at my partner, I saw the same grief on his face, as well. The grief may still well up unexpectedly and fiercely (will that ever stop?), but at least I'm no longer alone on this journey.

Oh Yes, That Sounds Like My Son...

2010-05-21T08:54:00.000-05:00

Yesterday, Blink's school had a special assembly to celebrate the school staff, culminating in an "open mic" for students to take the stage and thank special teachers and staff. I'm told Blink took to the stage and spent about two minutes giving a very thoughtful and sweet thank you to the aide who has worked most closely with him over the past three years. He told me he was nervous standing in front of so many people but that he felt happy to be saying nice things about Ms. C.

He apparently said that Ms. C gave him his first ever Lego set (this is a very big deal as it is his current obsession) back in kindergarten and that she has been "sweet" and helped him a lot ever since. Sniff. I wish I could have seen it.

But this uber-sweet side of Blink is only part of the story, of course.

Assemblies are loud and overwhelming and that's often bad news for Blink. Apparently, by the end of it Blink had some sort of meltdown and threw a sock(!?) at the school's principal. Oops.

But yeah, that sounds like my son.

Reaching Milestones I Didn't Know Existed...

2010-05-19T10:52:00.000-05:00

The epic battle with Blink's school over the bullying (which I've been reluctant to discuss in detail here) finally reached some resolution yesterday morning. Hallelujah.

After first denying, dismissing, and don't-let-the-door-hit-you-on-the-way-outing, his school's director took a different approach in our meeting and set forth some key policy changes that would ensure no students will be vulnerable to harassment when they use the bathroom as well as some specific adjustments to Blink's daily schedule and supervision to ensure the most vigilant monitoring of interactions between Blink and the bully.

Funny how everything changes when you show up with a legal advocate from your state's Disability Law Center...

While Blink is still showing signs of stress and anxiety, he is starting to moderate and behavior at school is starting to improve as well, so I'm hopeful we may have turned a corner here. And summer is rapidly approaching anyhow.

So. Another milestone in parenting a child with special needs has been reached -- successfully working with an advocate.

Banished from Occupational Therapy

2010-05-14T11:48:00.000-05:00

In the annals of Phone Calls One Dreads....

I was just running errands when I got a call from Blink's occupational therapist telling me at his appointment this morning, he threw an epic meltdown. Screaming, check. Running away, check. Yelling things like, "I wish you were dead!", check. Trying to bite the therapist, check.

Getting kicked out of occupational therapy, check.

Sigh. Oh, and all of this on the morning that we have a fill-in PCA taking him to OT.

I get it, I do. I certainly wouldn't want to endure this behavior from my clients. I guess this was the last straw for her. To be honest, I never really thought she and Blink had the best working relationship. They seemed to get embroiled in power struggles a bit much.

But part of me is sitting here, feeling like all the progress we've made this year is crumbling and taking away services isn't going to help. The very fact that this is happening indicates, to me, the need for more occupational therapy.

Erm, maybe somewhere else.

I sat down with Blink to discuss it. He was still stuck on the disagreement that set it off: joint compressions. He really hates the way they feel. The occupational therapist was telling him that it is good for him, that it will help him, that studies show... This incensed my dear son. He doesn't care what a study says, he cares what he is feeling and couldn't take the fact that once again, nobody was listening to him. And I understand that.

Of course it doesn't mean he somehow has full license to freak out on everyone around him. We went over the fact that even though he disagreed, his occupational therapist was in charge.

I matter-of-factly told him that she doesn't want to see him anymore. He looked surprised. He admitted feeling a little sad about that and understood why she doesn't want to work with him anymore ("because I'm having a hard time controlling my anger,") We talked about how to make it up to her and we settled on him calling and leaving her a message. IN A FRIENDLY VOICE, I stressed about a thousand times. So he called and apologized for hitting, yelling mean things, and trying to bite her. I then whispered, "you can tell her you'll miss her," and he said, "And I hope you change your mind so I can see you again soon."

So. I suppose the search for OT begins anew.

A Beautiful Mind (Or, How to Make Spelling More Palatable)

2010-05-13T11:32:00.000-05:00

Blink brought home the most creative spelling test last month.

Here, for example, is his answer for shout:

Almost all of the 20 words on the test were illustrated.

I particularly like his answer for trash:

I'd show you the one for litter, but the words were almost entirely obscured by, well, litter.

I'm also partial to "hush":

I love how something like this is a window into how his mind works.

Dare I say it's also a lesson for those who educate him? His teachers have been working to get him to complete the entire spelling test all year. For reasons only known to Blink, he had been stopping at 15 words -- that was his spelling limit. But look, on this particular day he did all 20 items. When his mind is engaged, Blink will perform.

Sweet Summertime?

2010-05-08T20:58:00.001-05:00

Summer is around the corner. Oh, glorious summer! (And oh, cruel irony, that as I write this the forecasters are warning of snow, SNOW!, in our immediate future.) When I think of the summers of my childhood, one word dominates. Freedom. No schedules, no agendas. Just pure adventure and unstructured time. (It didn't hurt that part of my childhood I was a latch-key kid.) I can't help but want this for Blink.

And yet.

The summer after Blink's diagnosis with Asperger's Syndrome, I had done my reading and I knew that kids on the spectrum need order in their worlds in order to feel safe and be successful -- predictable schedules, routines, and activities and the like.

With this knowledge in hand, I tried to schedule Blink for lots of structured activities. A rotating list of weekly day camps, T-ball in the evenings. For all this planning, I got a child who grew more disregulated by the week. For my understanding was incomplete. Yes, there may have been structure, but each week required a new environment, new people, new rules to get used to. And participation in team sports? That was hardly a recreational experience for any of us.

The following year, I decided he needed less structure. (And really, what's the point of spending all that time and money to schedule activities that aren't enjoyable and ultimately make family life more difficult?) Maybe there *was* something to having time to decompress and be free of schedules, I told myself. It was, well, not exactly disastrous, but by no means a success. Again, we finished the summer with more issues than we began.

Here I am this year, again trying to devise my plans and facing a longer summer than in past years due to the change of schools and school schedules. Again, I feel the need to give Blink some time to decompress from a challenging end to his school year. I'm aiming for a therapeutic decompression this year. Here's what I have on the docket:

Amazing PCA support, the lynchpin of the entire endeavor. I thank the stars for this resource.
4 weeks, spread out throughout the summer, of morning camps at the science-oriented nonprofit Blink has been participating in (mostly successfully) for the past few years.
Weekly social skills group*
Weekly individual skills training*
Weekly OT*
Hopefully, a weekly stress management class for kids on the spectrum
Maaaaybe swim lessons?
Season pass to the pool?

* These items are things we already do, so they won't be anything new to Blink. I'm hoping to make up a loose daily schedule that involves a lot of time outdoors and bike riding -- I am hoping we can do this without making it seem too proscribed but also giving a bit of needed structure. I'll have to report back to see how it goes!

Navigating the Aftermath

2010-05-05T12:42:00.000-05:00

It figures that once I get in the groove of posting, I find myself embroiled in a school dispute that leaves me reticent to discuss it in a public forum. Just now it occurred to me that I can certainly discuss, in broader terms, the challenges of supporting a child on the autism spectrum who is being bullied.

First, let me open it up: If you have ANY resources, books, hints, tips, advice, etc., hit me up, seriously.

This is tough stuff!

Here I have a child who is verbally and (in some areas) academically advanced beyond his eight-and-a-half years, yet has the social-emotional development and impulse control of a three-year-old. (And this may be a generous assessment -- the last professional to give me a developmental age pegged him as a two-year old in terms of social development. We've made some progress since then, but...)

Here also is a child whose default reaction to stress and challenges is anger. In a burst of self-awareness, Blink recently told me he has trouble thinking when he gets angry. "And then bad things happen," he grimaced as he explained it to me.

A child who sees the world in absolutes, in blacks and whites. A boy who has a limited ability to understand social situations, nonverbal language, and social nuances.

A child who "gets stuck" on ideas, thoughts, and feelings. Guess what he's stuck on now? Feeling persecuted at school.

This is not a recipe for success. And when a school's leadership oh-so-helpfully suggests that if you're concerned, you take your child elsewhere (and don't let the door hit you on the way out) it is, well, maddening.

So here I am. Everyone wants to talk about Blink's "responsibility" and his "choices." Because if there's anything that my laundry list above is a recipe for, it's behavioral challenges. And I get that. I am dealing with the aftermath day in and day out, of course. I do not wish to give the impression that I'm just giving Blink a free pass here. We do talk about making good choices and staying calm, yadda, yadda, yadda.

But what would you expect of a three-year-old who was being bullied? You would expect the adults to keep that child safe, physically and emotionally, because a three-year-old is not developmentally ready to handle this situation himself. And that's how I feel about Blink. His stress levels have gone through the roof and he needs to know the adults in his life are committed to keeping him safe.

It reminds me of Ross Greene's mantra. "Kids do well when they can."

So I am trying to walk the line between letting my son know that I am taking this seriously and feeding into the well of angry indignation inside him. It's hard to keep the doors of communication open with someone who can rant about being wronged for an hour. I'm looking for ways to lessen the impact of the stress on him.

I'm loving on him the best I can. What else can a mother do?

Living Vicariously

2010-04-28T09:56:00.000-05:00

Confession: As I'm sipping my coffee each morning, I peruse blogs like Angry Chicken, Say Yes to Hoboken, SouleMama, and myriad other destinations full of amazingly clean, organized, and decorated homes.

And then I turn around and see piles of papers. And legos. And pink stuffed animals. And cat hair. Oh yes, lots of cat hair.

Ah, well. It's nice to live vicariously for a few moments.

The Sound of Silence

2010-04-27T11:42:00.000-05:00

I survived the IEP meeting, faculties (almost) intact.

My best moment as an advocate was when I took a deep breath, reached in my binder and pulled out copies of a really fabulous "Dear Colleague" letter from the federal Office of Civil Rights and told the team I was sharing this to make sure we are all aware how that the federal government believes that if a school fails to protect a child with disabilities from bullying, then said child is being prevented access to a free and appropriate public education. I said, "So you can see how seriously the federal government takes this issue, and I want you to know I take it that seriously as well."

The silence was profound.

I feel like I did a good job as an advocate in a setting that is less-than-ideal for me, but yet still my frustration grows because Blink's struggles at school continue to escalate.

Today's the Day...

2010-04-26T10:05:00.000-05:00

Cue the dramatic music.

Today is the day of Blink's annual IEP meeting. I am reluctant to write much about it in advance, but given my last meeting at his school....well, gentle reader, I will leave it to you to make the appropriate inferences.

So as a last hurrah before I dig into my preparations (ah, hello to my old friend Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide... and newcomer How Well Does Your IEP Measure Up? Quality Indicators for Effective Service Delivery) let me share a few happy notes from this weekend:

* Blink started tickling me! It sounds funny, but this is totally new. While K and I often play chasing/tickling games with Blink's sister, he usually remains on the sidelines. Not so this weekend! He initiated many a game of "get Mama" this weekend. It was good for my soul.

* I told Blink "no, not right now" to a request this morning and he responded.... wait for it.... "Oh, ok." ??!!??!!!!! Now tell me that isn't a moment to savor.

* Blink is eagerly awaiting our tulips to bloom so that he can pick one and bring it to his sweet friend at school. This will be the third year in a row he's brought her a tulip. (And the last, because they'll be at different schools next year.) Sniff. Always nice to see him be thoughtful.

Brain Explode Now

2010-04-20T22:37:00.000-05:00

I'm so glad I talked to Blink about bullying this weekend. He came home from school on Monday with a most disturbing story. There's Blink, in a bathroom stall doing his business, when his nemesis and tormentor tries to barge into the stall, yelling at him and presumably, aiming to attack him. Blink reports that he managed to hold him at bay with the stall door until he gave up and left. Here's the thing, though: no staff were even aware that this even happened. Blink didn't tell anyone, either.

I did, though. I called an emergency meeting with the principal. Oh lord, what a miserable meeting that was. I don't understand what kind of principal, what kind of human being, could hear someone share their concerns about their child's safety at school and instead of being appropriately concerned and reassuring could instead be dismissive and hostile. My favorite quote was this: "Gosh, you know, if I were you... I know you're planning on enrolling him elsewhere next year. If you're this concerned, maybe you should consider moving up that transition."

Ah, nothing like a lovely exchange to set the stage for a collaborative, productive IEP meeting, right?

Putting an Epic Phase to Rest

2010-04-19T11:23:00.000-05:00

“Just how long can a phase last?”

I distinctly remember asking this, the desperation in my voice unmistakable, when Blink was about three-and-a-half years old. See, shortly after I told three-year-old Blink he was going to be a big brother, he wanted nothing to do with me. It was all Papa, all the time. Relentlessly so. It crushed me (the pregnancy hormones didn’t help, of course, nor did the strained relationship with his father.)

“It’s just a phase” is cold comfort when you’re in the throws of something ferocious and as-of-yet unexperienced. Months went by. My entire pregnancy. I drifted further and further from my firstborn son.

I suppose most phases don’t end as abruptly as they begin. They recede into the shadows unnoticed until one day you wake up and realize that its nowhere to be seen. That’s not exactly what happened with Blink. His rejection faded over time, but I slowly became entrenched in the grim-faced role of The Enforcer of Limits, Destroyer of All Fun. That’s an awfully lonely place to be.

Years go by and together we weather diagnoses, school woes, and divorce—none of which did much to improve our relationship. I agonized over this child, I advocated for him tirelessly. But so often when we were together the focus was on getting through the day. We locked horns over issues big and small, an endless exhausting cycle. I loved him fiercely. But my shameful confession is that I didn’t simply enjoy him nearly enough.

Oh, there were moments of great joy and tenderness. It’s true. I clung to these moments as if they were all that could sustain me in this parenting gig. And for a few years, they were.

But not any more. These past few months I have felt less like Blink’s adversary (getting out the door in the morning, aside) and much more like his champion, like his bigger, wiser adult ally. I think he feels like I’m on his side in a way he didn’t before. We are laughing more and more each week.

So what happened to make this possible? Well, a lot. Today I have having an amazingly supportive partner with wise insights, a man who draws me into the fun every chance he gets and provides a strong shoulder to cry on when I need to let it out. Blink’s medication, too, has played a role in getting past the physically aggressive meltdowns and let more of his true personality shine through. We can all relax a bit more these days. And wise therapists have given some advice that has helped us all grow closer.

I think I can finally answer my question: A phase can last roughly five-and-a-half years, in our case, at least.

Back off, bully

2010-04-19T10:20:00.000-05:00

On Friday, I read a moving blog post about one woman's experiences with bullying as a child. So the subject matter was already rattling around in my head that afternoon when I was chatting with one of Blink's PCAs, who works as a paraprofessional in his school.

Blink has struggled with bullying this year. And I have struggled to know how to react in the face of Blink's own issues with emotional control and his challenges in deciphering social situations. I've talked with his teacher quite a bit about this issue and have been assured that things are much, much better. The last time I asked, his teacher told me that Blink often acts in ways that alienate the other children. Sigh.

Anyhow, Blink hasn't mentioned much about teasing or bullying lately and so I thought perhaps the school had finally gotten things under control, until I heard from Blink's PCA that she and other staff have observed children teasing Blink under the supervision of a paraprofessional...WHO DID NOT INTERVENE. I guess it was that classic sing-song name-calling kind of teasing. She told me she'd seen Blink exercise tremendous self-control and time and again, the staff not intervene until he had made a fist or otherwise signaled that he was at the breaking point. She felt they weren't paying attention until it hit that threshold.

Shit!

I took Blink to lunch, just the two of us, yesterday to discuss this with him. I tried to tell him that as hard as we've been working on teaching him to be safe around others, that other people have to be safe around him, because we ALL deserve to be safe. Blink confirmed it's going on -- I think he's somewhat resigned to it now, sadly -- but he couldn't really tell me who was doing this. (I've noticed he has trouble identifying which child in a group did something.) I talked to Blink about what he could say to a teacher when this is going on and he told me that telling the teacher would make it worse, because they would do it louder and that would be more embarrassing if the whole class heard. This stuff is hard.

Harder still because I'm guessing all of the kids involved have special needs of some kind.

I need to talk to Blink's teacher about this, again. But at what point is talk not enough? How can I trust the school's assurances that they have it under control? It's not like I can count on Blink to tell me what is what. We have just over two months left at this school. So short and yet so long.

What would you do?

"He's asking too many questions." (Sigh!)

2010-04-14T18:26:00.000-05:00

I sent Blink off to his second after-school class—an Inventor's Workshop—at a fantastic little nonprofit nearby that focuses on the intersection of creativity and science. He's attended a few classes and camps in the past, with a PCA there to intervene if need be. Blink loved the first week of his Inventor's Class, coming home full of fun ideas and stories.

I cannot tell you how much I want this place (which is right in our neighborhood, even!) to be the place. The place where Blink can thrive and fit in and feel like he's just another kid. The place where I can send him without support someday and feel confident he'll do well.

When I texted his PCA this afternoon to check in, she replied, "He's getting a bit confused because the workers here aren't consistent. One guy had a talk with me because Blink asked too many questions."

Cue heart sinking.

I can picture it. An enthusiastic Blink is a relentlessly inquisitive child who is filled to the brim and will ask ALL of those questions on his mind, peppering each one with an insistent, repetitive "Excuse me, excuse me, excuse me..." A child that won't notice that he is monopolizing the teacher's attention.

I suppose it isn't realistic for me to expect a magical place where Blink's issues don't matter. But damn it, I do!

The Blame Game

2010-04-08T10:08:00.000-05:00

This morning, Blink and I were goofing around on the walk to school. He was walking right behind me, so I jokingly stopped short and we collided. I like to play these kind of games to give him some heavy pressure and get him laughing before we walk into the school building. All was well until he started playfully stepping on the back of my heels. Which hurt! So I told him that and he...got upset and angry. "You're blaming me! You think it's my fault! Everyone blames me for everything!"

It's a pretty typical Blink response. Dramatic yelling and complaints and angry withdrawal. It's a little mysterious to me, like a switch has been flipped. I'm not sure what triggers it, but once he's in angryland, it's hard to know why he's there or to get him back.

This morning, I tried to get him to see this was no big deal. I said, "Look at me, do I look angry?" He told me that I was obviously faking it. I tried to reassure him that I wasn't. I asked him if he wanted to take a minute before going inside the school. He did not. But in the hallway, he said, "It just feels like I always ruin games. I always mess up games. No matter what I do."

I just about fell over. He told me what was going on inside his head!

I had no idea he was feeling this way. None. The anger response really masks what's really going on for him. Like everyone else around him, I get caught up in dealing with the loud, angry outburst and never see what's going on inside. And you know, it is really difficult to summon up a lot of compassion for the child who is screeching/thundering at you when you have no idea why. Much easier to remain compassionate when you know the kid is mentally beating himself up. I wonder if he's always blaming himself when he yells "You're just blaming me!" Interesting.

So I was able to tell him that this wasn't anyone's fault, that when two people roughhouse this kind of thing happens, and furthermore, I was the one who started it in the first place. I just kept stressing that is was No. Big. Deal. Then Blink got stuck on another frustrating situation at his father's, which I decided not to engage.

By the time we got to his classroom, he was still mildly out of sorts but when his teacher reminded him that it was his turn to share today, he snapped right out of it. Hurray!

Deficits, Undesired Verbals, Oh My

2010-04-06T10:26:00.001-05:00

I was so nervous about Blink's re-evaluation. Between rumors that his school thought he was a good candidate for an EBD room they were planning and stories about ASD kids with strong academics who were found not to be eligible for special education services, I was a mess. Throw in a little stress and awkwardness about the transition to a new school next year and....yeah. Not pretty.

But the meeting went well, about as well as these things can go. Because let's face it, even with a team of professionals that cares about your child it is just so so so emotionally draining to participate in a meeting where terms like this are bandied about:

deficit
weakness
<1st percentile
undesired verbals
atypical behaviors
withdrawal
aggression
conduct problems
hyperactivity

The list just goes on and on. Maybe the hardest to read are the observations of Blink in the classroom setting. Oh, look, there's Blink laying on his stomach playing with a desk chair instead of participating in the morning meeting. Two minutes later, he's screaming "Just leave me alone!" Then he's in a throwing fight with another child. Seeing it in a description like that just does me in. I know all of the behaviors, but putting it all together makes it so much more real. So glaring how he is not succeeding in this environment. So glaring how his lack of social skills are hampering everything.

One of the more striking tests was the Social Language Development Test, which examined Blink's ability to make inferences, assess visual clues in a picture, take on another's perspective, solve problems, and make multiple interpretations of scenes. The test showed just how profound his struggles in these areas are -- his composite score was in the 1st percentile of children his age. Ouch. But it does give us something to focus our efforts on.

The handwriting assessment was less helpful. He scored in the low average range on some tasks, lower on others. It's not clear exactly what might be causing the problems he's having.

We also reviewed the results of the FBA they've been conducting -- a functional behavior analysis that is designed to figure out the root of problem behaviors and formulate a positive behavior plan in response. They tracked Blink's behaviors over about 2 months and found that, on average:

He leaves the room or an activity without permission once or twice a day
He engages in "undesirable verbals" (rudeness, yelling, etc.) seven to eight times a day
He uses "verbal aggression" (name calling, threats) two to three times a day.

This makes me wince. The next step is to formulate a plan. We'll see how this goes.

Old School played nicely with New School and was, in fact, quite welcoming. New Teacher is going to come and observe Blink in his current classroom. I'm so happy about this! On the way out, I asked New Teacher if she was asking herself what she'd gotten herself into and she did a convincing job of saying she wasn't at all afraid. She still thinks it will be a good setting for him.

All in all, it was as good as a meeting like this can be. I just want to crawl into bed with my laptop and watch Weeds and knit for a few weeks now, that's all.

The Anger Response

2010-04-05T12:58:00.000-05:00

Blink has always been the kind of child with, shall we say, strong feelings. It wouldn't do him justice as a person to describe him as an angry child — that wouldn't touch his brilliance, his sense of humor, his creativity. But the truth is, he is angry a lot of the time. Anger is his default response. It's easier for him to start yelling than it is so sort through complicated emotions and communicate nuance.

It's no fun to live in a household full of angry outbursts. (Trust me). So this is an area we've been working on a lot lately. Blink's therapist suggested we label his angry behavior for him. So I've been simply saying, "That's yelling, Blink," telling him it isn't allowed, and telling him what he can say or do in the situation.

To tell the truth, I've been working on this for months -- it's hard to internalize new responses to situations and summon forth a new boilerplate response when my adrenaline is skyrocketing from dealing with the explosive situation. But slowly, it's starting to feel (more) natural and normal. I've made great strides in distancing myself from the situation.

Something clicked for me this weekend. Blink was upstairs in the playroom, alone, playing with his legos, and had been for quite a while. It was a gorgeous day and I called up to see if he wanted to go play outside.

"NO!!!!" was the thunderous response. As if I said, "Blink, would you like to go to get a painful medical procedure done?"

I paused for a moment and said, "You sound really angry. Did it make you mad that I asked you if you wanted to go and play?"

Pause.

"Uh, no, I think my throat is kind of scratchy and that's why it sounded like I was mad," he explained.

"Oh, so you didn't mean to sound like you were mad?"

"No. Maybe we can play in a few minutes."

"OK, sounds good."

And then 5 minutes later, he came outside to find me and we played basketball for 15 minutes.

This little encounter renewed my goal of not getting personally invested in his anger, labeling it for him appropriately, and helping him see when it's the wrong response. It's like his wires are crossed and everything diverts to anger. If I don't add my own intensity to it, he can (often) find a course correction.

In other news, Blink's school re-evaluation results meeting is today. I'm nervous. I'll feel a lot better once this is done.

Big Changes on the Horizon

2010-03-30T10:54:00.000-06:00

It's official. Next year, Blink will be attending a new school. We're moving out of the charter school system and into the public schools. He will attend our newly-designated neighborhood school with his little sister, who is entering kindergarten. As the fates would have it, this school has an autism program.

Big changes. Blink will move from a school of 75-80 kids, my guesstimate is 90% of whom receive special education services, to a school of 300+, including the ~16 or so children in the autism program.

Although technically Blink is currently in a "mainstream" classroom for part of the day, it doesn't feel that way to me, given the population his current school serves. The truth is, he's not doing so well in this setting, behaviorally speaking. Academically, he's doing fantastic — which is all the more impressive given the limited extent to which he's been "present" for learning lately.

It's been a rough school year, rife with bullying and challenging social conflicts, boredom, and a classroom full of volatile personalities. Blink is stressed out and anxious and stuck in a rut. I think the lack of positive role models for behavior is a real problem for him. He has trouble participating in a lot of group activities -- he'll get angry and run out of the room, for instance.

At his new school, Blink will have the opportunity to mainstream in a classroom of 25-odd typically developing peers with support from the autism team. He'll be integrated into the mainstream classroom to the extent that he's able to be successful.

Conventional wisdom would say that if the kid can't hang in the uber-staffed special education classroom, he's never going to cut it in a mainstream room.

I hope that's wrong. I think it is wrong, in Blink's case.

Here's our thinking:

1. Blink is bored. He needs to be challenged and stimulated academically. I've been beating this drum for years, suggesting that if his mind is occupied, his behaviors will improve. Sadly, it remains untested. The new school seems like it has a lot more academic rigor, tons of enrichment opportunities, etc.

2. Blink needs positive role models. When he's around high functioning kids, he models more of their behavior. He is getting more and more awareness of other kids' perceptions of his behavior and he understands that the standards will be different (much higher!) at the new school.

The potential is huge. Now, to do whatever I can to get him ready....

Thank God for Email

2010-03-23T09:47:00.002-06:00

This morning, I have:

Written the county social worker
Written a consultant who will hopefully be able to join an evaluation meeting by phone
Engaged in email correspondence with private OT
Written teacher to ask for IEP progress report and FBA data
Written school OT about trying something new
Answered email from Blink's therapist

Phew. Now let's hope I can actually follow-up on all of these threads....oh, and actually get some work done, too!

Bits of Miscellany

2010-03-22T10:46:00.000-06:00

I think I've hit upon something big: the key to resolving problems is to blog about them!

Case-in-point #1: I suggested that it might—gasp—make sense to wear sneakers (aka Tie Shoe Implements of Torture) to school rather than his usual rain boots....and Blink reluctantly agreed! Interestingly, he had those shoes on before I even had a chance to nag, err, remind him. (Did he leave them tied and slip them on? It seems so....but what happened to the just-right-tightness problem?)

Relatedly, Case-in-point #2: We had the most delightful morning laughing and enjoying each other. Blink was the first person ready to go out the door. I think this has happened ONCE before and it was also in the past two weeks. Such a dramatic change...and nothing to explain it, really. Yes, I did make a morning routine picture schedule but we haven't been using it that much. We haven't needed to.

It's a strange business, this. I can't help but feel sometimes like there's this secret code that will Explain Everything, if only I could find it.... Which brings me to the low point of the weekend: watching Blink slam his fists against his head to convey his anger and disappointment that not one, but two planned destinations were unexpectedly closed yesterday afternoon. (Fort Snelling Park, closed due to flooding. Our plan B, Chutes and Ladders? Also closed. Arrrgh!) Self-injury has never been much of a concern before, so this is a fresh and new agony. Blink told me he hits himself when he wants to hit someone else. Yep, add that to the anguish list.

While I'm on the subject of tangled-up-heartstrings, I've been reading Anything But Typical by Nora Raleigh Baskin—a young adult novel told from the perspective of a 12-year-old boy with autism. The descriptions of the boy's relationship with his mother make my heart ache. When I read the main character's inner thoughts, I wonder if this is what life is like inside for Blink. I read him the first chapter and tried to talk about it, but he wasn't that into it. No matter. I'm forcing myself to hold back and let him come to it on his own. He's young, yet, for the story line.

The Persistent Agony of Shoes

2010-03-18T13:32:00.000-06:00

Spring is upon us! But with the fresh air and the birds singing comes a familiar old challenge for Blink: shoes. Even in the face of the myriad winter-weather gear challenges, winter affords us a break from this perennial source of agony for Blink and everyone around him by giving him a convenient reason to wearing boots every day, inside and out.

As I write this, it is 60 degrees and sunny. And Blink is out playing in....rain boots. You see, he couldn't tie his shoes to his liking and he refused to try it a second time. He just learned how to tie shoes this past fall after a concerted effort by his occupational therapist, who ordered us to get him tie shoes. After a winter of avoidance, his skills have regressed a bit. I suspect he may never enjoy tie shoes, but hope after a few weeks of acute agony he will again gain a basic proficiency.

Those close to me have asked me, gently, why I'm torturing us all. Can't he just wear velcro shoes? And after listening to him scream his head off this afternoon, I'm beginning to wonder as well. At what point can I safely determine he knows the skill and allow him to choose the footwear?

He Listens to His Mama?

2010-03-17T09:08:00.000-06:00

Last night, I watched Blink dry his hands on the towel and let it fall to the ground rather than putting it back on the towel bar.

"Blink, the towel is on the floor."

"Yeah?"

"Well, pick it up!"

"But that's where I found it! You're always telling me to put things back where I found them."

I don't know if it's better or worse that I don't think he was trying to be a smart-ass.

Doing it His Way

2010-03-16T08:47:00.000-06:00

Last night, Blink was in a mood. It was time for bed and he did not want to wear a shirt — a choice that made the mother in me really bristle. It's too cold for that! I spent some time trying to convince him of this fact. We both got a little frustrated with each other. And then I managed to take a deep breath and use the Cooperative Problem Solving model.

"You don't want to wear a shirt," I repeated. "What's up?"

According to the model, the child is now supposed to share their concern with you. Once you hear what's really going on, you can find common ground. More often I hear things like "I dunno, I just don't wanna."

But last night, Blink said to me, "Mama, I just want to do one thing my way. All day I have had to do things other people's way. Can't I do just do this one thing my way?"

Well. That certainly reframed the discussion.

My exasperation was instantly replaced with empathy. Does it really matter if he wears a shirt to bed? No. Yes, he might get cold. Yes, he might wake me up if he does. But I was able to air those concerns with him and he was able to articulate a solution for us (wedge a t-shirt partway between his bed and the mattress so he could find it in the dark).

Who knows if it is related, but we had a fantastic morning today, too. When I dropped him off at school, a para said good morning to him and added, "Are we going to have a better day today?" Hmmm. No daily report came home yesterday so I have no idea what transpired. I hate it that an offhand crappy little comment like that can hang with me.

Outburst-a-Rama

2010-03-10T12:09:00.001-06:00

Blink and I (and by association, his little sister) have had some rough mornings lately. Like the day I had to essentially drag him to his sister's school while he screamed, "Help! Let me go!" That was bad news.

So I've been doing a lot of thinking on how to make the morning go more smoothly. I have started waking him earlier so that he has more time to move slower than molasses. I made a new morning schedule. And I am trying to make this my mantra: It's ok if we're late.

Things have gone better since I instituted these changes, but I still find myself holding my breath each morning. Is it going to be one of those mornings?

Today started out uneventfully. We walked his sister to school and then walked to his school, as always. I let him hold the umbrella. He was fairly cheerful until we walked inside and I could feel his mood starting to teeter. Just as I was about to say goodbye to him, he realized he did not have his half-finished comic book. Apparently he wanted to share it, which I did not know. The truth is, it could have been anything that he suddenly decided he absolutely positively needed at this very moment.

Blink screamed. He started breathing all funny — it sounds like he's hyperventilating, like he is terrified, completely out of proportion to the situation. He screamed some more. I told him it was "toooooo big" of a reaction, which was completely ineffectual. I told him we could problem solve if he stayed calm. He wanted me to go back home to get it. I could have. But I said no. I feel a little guilty about this, even though I know that it's not really about the object he forgot. Rather, it's that he was anxious or otherwise disregulated and he went to his default regulation strategy: angry outburst.

Oh, Blink. If only we could move past this response, all of our lives would be so much easier. I'm so tired. A month ago, you were doing so. well. What happened?

On Vision and Guilt

2010-03-03T12:01:00.001-06:00

I got an email from the Occupational Therapist at Blink's school today. She's concerned about his vision.

Oh, yeah, that. The ball that I dropped.

Blink was diagnosed in December of 2008 with amblyopia, also known as a lazy eye. He was prescribed glasses. He picked out the coolest, edgiest frame in the store, with bright blue frames. He looooved them. I wanted it to be his choice, to give him ownership. Particularly since in addition to wearing glasses, we were told to patch his weak eye for two hours each day. I remember thinking at the time, "How the hell am I going to do that!?" Because patching involves, well, a patch, that is taped to the skin around the eye. Anyone with a tactile-defensive child knows exactly how nervous I was about this "simple" little endeavor...

But as it turns out, we didn't even get to that point. Step 1 was simply to wear the glasses, which was completely derailed when a classmate of Blink's laughed at his glasses. He hated the attention he got while wearing them. He adamantly refused to wear them again. Period. And, upon the advice of my own eye doctor who told me it wasn't make or break, I let it slide.

Since then, we've taken baby steps. Blink willingly wears them for screen time. Lately I've been handing them to him when he's reading. But none of this translates into wearing them in public.

Today's brought my guilt over this matter right up to the surface again. I know intellectually that one can only take on so many battles at once, but I can't help but feel just a little neglectful for taking such a hands-off approach. Oh, guilt....

An Unreliable Source

2010-02-24T22:34:00.000-06:00

One of the challenges that we've been grappling with lately —and most definitely one playing some role in the backslide in Blink's behavior — is a major conflict/bullying situation Blink's in the middle of at school. Another child (with special needs of some kind) has been targeting him physically and verbally, to the point that Blink was completely stressed out and started lashing out physically toward the child on a preemptive basis. That, it seems, is what got the school's attention.

I feel like they should have done more, earlier. However, I wasn't much better in recognizing the severity of the situation. Blink could go on for hours about "bullying" that was nothing more than another child tiring of being bossed around. So it's hard to know when to take him seriously.

I checked in with him today about his encounters with said child. He informed me that the child said something mean to him at lunch. I asked him what he did and he told me he went up to a teacher, told her, and asked her to go insult him(!). Ha. Oh, Blink. He did laugh about it at dinner. "That was a little bit silly, asking her to insult him," he said. I was so happy that he got a teacher rather than exploding, but inside I was boiling in that Mama Bear kind of way that this child was calling my son names and thinking I ought to check with the teacher, etc. And then Blink offers up, "Well, I might have kind of made [other child] call me names." When asked for clarification he says, "Well, I might have thought that he insulted me when he walked in the room, but maybe I was wrong." I asked him if he said anything mean to the kid. He said no but then faltered and admitted he "got mad" and I wasn't able to get to the bottom of the matter. His daily report has a smiley face for lunch, so....perhaps it was a minor blip.

I swear, it's enough to make a mama want to send her child to school with a hidden camera. I find it so hard to advocate for him when my only source is so unreliable.

Two Steps Forward....

2010-02-23T14:58:00.001-06:00

The last month or so has been so lovely around here. Things have been going so well with Blink. Peaceful, even. I found myself relaxing, letting down my guard, truly enjoying life with Blink.

And now, it seems we're sliding backwards into more disequilibrium. More panicked screaming and getting stuck. More angry yelling. More aggression. More gritting my teeth and trying to get through the day. Many more negative reports from school.

I always find myself trying to analyze the factors responsible for an upswing or a downward cycle. The answers almost always are illusory. This time, however, I think it's clear that a bully/conflict situation has stressed him out incredibly and though the school has taken some steps to stop the situation the effects are going to reverberate for a while. (As an aside: can I tell you how angry I am that this had to happen just when he was doing far better than I can ever recall? Aaauugh.)

As always, I find myself, well, emotionally blindsided by this downturn. It's not like I consciously think we have moved past a challenge like the public meltdown, but on an emotional level....I do. This weekend, we went snow shoeing and halfway through, Blink got stuck on the idea of cross-country skiing. Right. That. Second. Which so wasn't going to happen. I thought maybe he could pull himself out of it, but no....so that was that.

Some time later, everyone safely in the car, our excursion cut short, I couldn't contain the tears spilling down my cheeks. I was so disappointed. Later, I told my partner, "I thought we were past that." And as I said it, I smiled because it obviously isn't a realistic expectation.

Challenging moments like this bring out a primitive narrative that plays in my subconscious. Underneath all of the thinking and the planning and the hoping and the worrying, there's just a mama who is heartbroken that her son's life is so hard and would do anything to change that. And her anguish bubbles up in times like this.

"The long and winding road" by the Beatles keeps playing in my head. I need to remember that the path of growth isn't straight. That's ok. (Well, it doesn't always feel ok, but I can work on finding ways to roll with it.)

A Moment to Savor

2010-02-17T10:24:00.000-06:00

This morning, when Blink and I were dropping his sister off at preschool, he spied the big construction paper heart in the hallway where people were invited to write down the names of those they love. I said, "Who do you love, Blink? You can write it down." To my surprise, he eagerly grabbed the marker and wrote his sister's name and signed his own, adding that he is her big brother in parentheses.

I have really been trying to hang onto moments like this, to let them shore up my emotional reserves for the more challenging moments. (Like his schooling....but that's another post altogether.) Moments like this remind me that Blink is full of feeling and empathy; it's just that he has difficulty expressing it in the manner most people expect. But even so, it's clear he's making progress.

Laughter

2010-02-16T15:10:00.002-06:00

Blink is laughing a lot more these days. This is wonderful in so many ways. One interesting side effect has been a window into his burgeoning sense of humor, which seems to me to have a decidedly Aspie flair. The image above is from Blink's Valentine's Day card to me. This was the inside. Apparently, after he made it he was rolling with laughter. "Get it? Get it?" He demanded of his audience. It makes me smile.

The Neuropsych Jitters

2009-11-03T08:01:00.000-06:00

We're off to the Neuropsych this morning.

Blink has woken up the most cheerful and social he's been in a month. "Hi, little miss E" he greeted his little sister to my shock and amazement. He offered to share candy with her (um, please ignore the fact that I let them have a little piece of candy with breakfast!). Both of these small acts must seem so commonplace and ordinary to those not on the spectrum. But for us? Highly noteworthy.

Wonderful, fantabulous, hallelujah, right? Yes. Except part of me is getting nervous. If he's this charming and wonderful at the appointment, will they be able to see his issues? I felt the same way at his first evaluation. Worry worry worry. I thought I was beyond this!

Crazy Quilt

2009-11-02T20:18:00.001-06:00

Here I am, the night before the big neuropsych evaluation. I've gathered reports and updates and evaluations from school, occupational therapists, teachers, attempted the neurologist (still forthcoming, oh well) and and and....it isn't sounding like a very long list now but let me tell you that was a mighty thick packet of documentation. And I can't help but wonder, will the neuropsychologist have read all (any?) of this info she requested?

I managed to (at the last minute) call in favors and child care swaps and get coverage for both appointments. No small feat, this. My schedule is so complicated and my level of general overwhelm so high that I realize I need to do this kind of thing at the last minute. But it's all tied up now.

Still, I'm a bit nervous. Will Blink cooperate?

I'm directing all this nervous energy right now in two directions. One is a quilt project that is perfect for me -- a project that delights in turning quilting on its head by actually benefiting from what is usually my downfall: a lack of precision. I'm quite excited about this project.

The other is a new online tool that at first glance, has nothing at all to do with quilting. But as I play around a bit on Autism360, I am struck by the parallels. This site, launched by the Autism Research Institute offers me the chance to upload personal information about Blink's specific strengths and challenges, treatments we've tried, and other salient information. Theoretically, this can be used as a way to track his progress -- pretty exciting concept on its own, in my opinion. But what's really cool is that this info is used (without any identifying information) to identify others who present similarly to Blink and I can at a glance see how this subgroup has responded to various treatments. This could prove tremendously helpful.

So how is it like a quilt? Just as scraps of old dresses (and ahem, fabric store purchases) that on their own are not particularly meaningful or special, so too are the bits and pieces coming together on Autism360 to form a really complex and useful aggregate.

Now, let's just hope I finish my quilt *and* Blink's profile on Autism360. Because in both endeavors, follow-through is the key...eek!

(Almost) Three Years In...

2009-10-27T20:47:00.001-06:00

I'm gearing up for Blink's re-evaluation. It's hard to believe that it's been 2.5 years since his Asperger's diagnosis. Last time, we did a straight autism evaluation. This time, we're doing a neuropsychological evaluation. There's a good deal of overlap between the two (both have iq tests, for example), but the neuropsych is more comprehensive. And, I've been told, is the way to go so we can suss out what role ADD might be playing in his challenges. He doesn't have this dx now, but over the last year it has come up a few times as a possibility for him. (And once by someone whose professional opinion I really, really trust.)

And honestly, he has gotten much more distractable and spacey lately. I cannot tell you how many times I've tried to talk to him only to have him say, "Huh??" (though maybe that is more of an auditory processing issue?? Someone who knows more, I'd love your thoughts on this...it was brought up as a potential concern but never really explored with him.)

Anyway, I had to have his teacher fill out a form about his challenges/strengths. It's the same form his preschool teacher filled out 3 years ago. Kind of interesting to see the differences between them. Some of it due to progress/maturity, some of it I'm sure due to the fact he's in a special ed setting now and not a Montessori preschool, plus the different perspectives of different teachers. It was interesting to see confirmed that his attention issues seem more of a concern now.

Just to get my head around it, here are the areas marked "very much" (the highest category) by his teacher:
* often acts without thinking
* frequently calls out in class
* has difficulty waiting turn in game or group activity
* quarrelsome, argues, or debates
* Acts "smart" [ugh, i hate this wording!]

And those marked "pretty much" (3 out of 4 on the scale)
*is easily distracted
* has difficulty concentrating on school work or other tasks requiring sustained attention
* shifts excessively from one activity to another
* has difficulty organizing work
* needs a lot of supervision
* has difficulty staying seated
* restless or overactive
* fights, hits, punches, etc.
* frequently interrupts other children's activity
* is bossy, always telling other children what to do
* teases or calls other children names
* refuses to participate in group activities
* loses temper often and easy
* excitable, impulsive
* disturbs other children
* fails to finish things he starts -- short attention span
* cries often and easily
* mood changes quickly and drastically
* temper outbursts, explosive and unpredictable
* uncooperative

Just for the record, he didn't get a single trait marked "not at all" either time. What a litany of complaints, huh? But I'm not complaining. It's accurate. Overall, his "problems" were rated moderate this time, again (3 on a 4 pt scale).

I'm really feeling like something is changing/has changed with him. His medicine (prozac) doesn't seem to be helping him any more. He is often unhappy, unfocused. A month or so after the neuropsych we will go see his neurologist. I'm strongly considering asking about ADD-type meds if we end up with that diagnosis, which I strongly suspect we will. I like that we could try them out and know if they're working quickly, and change course if not.

I'm working with a new therapist who is coming out to the house each week. I like her a lot. She suggested I try out the Explosive Child book by Ross Greene. I happened to have that, having read it about 3 years ago. It made a lot of sense to me back then but implementing it in a household with my former husband was impossible. I think it's a great time to revisit. Greene suggests that kids have meltdowns, etc., because they have a very low tolerance for frustration and are highly inflexible. Ding, ding, ding! That's my boy. He says they are delayed in acquiring skills in these areas. Much like a learning disability, they need direct instruction and extra practice to acquire them.

I like that the author is highly compassionate about challenging kids. I'm just going to level with you here and say that I dislike that he advocates taking consequences for explosions totally off the table. I'm not going there again. I realize my reluctance here stems from my incomplete and flawed implementation with Blink three years ago, but I just spent the summer trying to take the control back as the head of this family and I'm not willing to step away from this approach. I'm still trying to figure out in my head what that means to me and how it will work with the book. (It's always been hard for me to take what works and ignore the rest in a model.)

But I believe Blink is now developmentally ready to understand there are consequences to his actions and if you act like an asshole, guess what, you go to your room. (And that's as much for his sister's and my sanity as it is to teach him anything.) I also honestly believe that Blink is so ego-centric that he does not realize what he is doing is wrong and he rarely expresses remorse, so in my mind it is appropriate for me to be doing this. (And let's face it, it's helping. There's that.)

But! The good news is hopefully there will be less need for consequences if we defuse the situation first using what he calls a Cooperative Problem Solving model.

So my task starting out with this is to log all of the things that frustrate Blink for a week. Whee! It's going to be a long list...

On friendship & growth

2009-09-29T16:05:00.003-05:00

This summer, Blink made a friend. He has had friends before — kids he clicks with and play well with. But this was the first all-consuming friendship, with a boy across the street who is almost always available to play. It didn't take long for the difficulties to begin.

It's been so hard to watch, so painful for Blink, so hard for me to accept that not only is Blink sometimes not a "good friend" but even more so, he has absolutely no capacity to handle moments of disagreement and the inevitable moments in which one's friend is not exactly being fair.

As a parent, there is such a temptation to pull back from these excruciating moments, to peg his friend as a mean kid and tell myself Blink is better off without friends who treat him poorly. In my heart, I know it has the potential to be a learning experience. I know that this is going to come up again and again and pretending it is going to go away does a terrible injustice. So of course I try, I try to talk things through with Blink, get him to see me as an ally. I try to process afterwards. I often feel like I'm fumbling around in sumo wrestler body suit, my attempts clumsy and ineffective. But I try. Because that's what I do.

So when I can see I got through to Blink, you can guess how fucking incredible it feels.

The most recent incident had to do with Blink's friend not keeping his promises, which devastated Blink and caused him to scream and cry and scream for 45ish minutes. It really was unfair. The next day in the car, I was telling Blink how if he had simply said calmly, "Well, I'm not going to play with you if you don't keep your promises" and walked away, M would have likely changed his tune tout suite. On Friday, Blink's friend was kind of being a shit and Blink said, "M, M, M, M" trying to get his attention. I had a mama intuition moment and said to him, "Blink, it sounds like there's something you want to say to M." I had to do that like twice, not sure at all what was actually on Blink's mind. But he said, calmly, and firmly, "I'm not going to play with you anymore if you don't keep your promises." There was silent, secret cheering going on behind their backs, let me tell you!

Fast forward to this morning. Blink and I were doing the OT circuit we do before school each morning in the school's OT room. We'd negotiated 50 jumps on the trampoline. Blink did 30 and got off. "I'm doing 30," he said, with a bit of a playfully snotty attitude. I was like, "Oh really? You aren't going to keep your word? Don't you remember how you felt when M didn't keep his promise? It's important to keep your word." And he immediately got up and started walking to the trampoline. He got on it and said, "Well, when I say a number, I subtract 20 automatically so 50 is really 30...." (trying to make a rule that would give him a loophole) and I laughed and shook my head. He gave me 20 more jumps. Not a complaint at all.

Then, as if I wasn't already feeling like a million bucks this morning, my favorite aide at his school pulled me aside to tell me that last week, a boy in Blink's class had lost a toy at recess and was very sad. The next day said boy was absent, but Blink spied the missing toy on the outside of the fence. He apparently very deliberately fished it out with a stick and very excitedly ran to tell the aide. "I found J's toy! I can't wait to tell him that I found it! He's going to be so happy!" The aide told me that this was such a clear indicator of how much progress Blink has made. "A year ago, he would have wanted to keep the toy," she said. "No doubt in my mind." Sniffle.

He still has problems, no doubt (like having to leave gym class for being aggressive 3 times in the last week) but it's so nice to hear about progress. So nice.

And today's theme song comes to us courtesy of the Cure...

2009-08-26T10:18:00.011-05:00

My preoccupation d’jour is a riff on an age-old lament known by all parents of a child with special needs: whatever I do, it’s never enough. (And yes, I can hear the Cure playing on an endless loop in my head as I write this.) But let’s aside the self-pity for a second and examine the sentiment.

I know myself. I know that I can only direct my energies in so many areas at any given time. Looking back, I see a scattershot of different therapies, ideas, and approaches. There was the 6 weeks I focused on eliminating all casein/dairy products from Blink’s diet (No change). And who could forget the Wilbarger brushing regimen (did seem to help), or the 5-point-scale (should have tried harder), not to mention experiments with behavior charts, sensory diets, Therapeutic Listening, supplements, etc., etc.

I’m exhausted just thinking about this list, which is hardly comprehensive.

And yet.

The battle rages in my head.

On the one hand, I make a concerted effort to tell myself it’s OK to be exhausted. I’m only human. I’m a single mother raising a challenging kiddoo; I’m certainly no superwoman. We will muddle through this just fine in the end.

On the other, I can’t shake that nagging feeling that (wait for it) I’m not doing enough. I could do more. It’s up to me, after all. Nobody is going to advocate for Blink like I can. No matter how many therapy appointments I manage to add to the mix, it’s up to me to make it all work, to integrate everything I’ve learned in theory into our daily lives.

I know it’s not healthy walk around with the weight of Blink’s Future as a Human Being on my shoulders, so I try to keep it in perspective. No longer do I beat myself up when I have to retreat from autism-land for a bit. The guilt, it still circles me, but I dodge it. And then I dodge it some more. I don’t need any more weight to carry, thankyouverymuch.

But I do find myself wondering how to decide where to focus my energies. Pick your battles is a mantra drilled firmly into my head, but how do I choose when there are so many?

On the outskirts, peeking in

2008-11-18T16:26:00.001-06:00

This blog is a place for me to process the adventure and challenge that is raising my son, whom I will call Blink here.

Blink is 7 years old (nearing 7 and a half, he'll be quick to add.) He brings me so much joy, and he brings me to my knees it is so hard to be his mother sometimes.

It's been a year and a half since he was diagnosed with Asperger's Syndrome (and shortly thereafter, Tourette's Syndrome). And before that we had the more vague "sensory processing differences," "motor incoordination," and "gross motor delay" -- collectively known as whatever else might be making life so difficult for him and everyone around him.

I can remember the feeling of being on the precipice, looking over at this whole new universe...wondering if that's where we belong. I remember hoping that everything would fall into place once I had his diagnosis in hand. That it was simply a matter of putting the right supports in place and then life would go back to being manageable. And now I look back at that wish and laugh. Oh, if only it were that simple. Life doesn't stand still, of course. Just when I think I've got it semi-figured out, everything changes and we're back to square one. I hold my breath when things are going well and I beat my head against the wall and somehow find the strength to pick myself up again when things are not going well.

Expect a bit of both herein....