Living Vicariously

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

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...

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

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

“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

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!)

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

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

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

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.