Tuesday, May 25, 2010

The Grief We Carry Arround

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.

Friday, May 21, 2010

Oh Yes, That Sounds Like My Son...

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.

Wednesday, May 19, 2010

Reaching Milestones I Didn't Know Existed...

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.

Friday, May 14, 2010

Banished from Occupational Therapy

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.

Thursday, May 13, 2010

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

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.

Saturday, May 8, 2010

Sweet Summertime?

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!

Wednesday, May 5, 2010

Navigating the Aftermath

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?