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...

On friendship & growth

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...

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.

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?