An Unreliable Source

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....

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

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

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

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

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...

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...