Happy ADHD Awareness Month?

Which I'm slightly dubious about. I like the idea, let's say, but the execution, in past years, has seemed ... a bit circular. Are we raising awareness among each other or the general public? Because if the general public hears the same conversational checklist every year about why ADHD is real, isn't the general public going to get annoyed and tune out?

Also I think the general public might be more concerned with Ebola right now.

And the thing is, I don't need my awareness raised. I'm pretty well aware. What I could use is some advocating. Like, can some awareness-raising expert also explain why I can't find a social skills group that takes insurance? Or why the one group my insurer recommended that allegedly does take insurance explained to me they'd just hired several facilitators that wouldn't be covered, and there's no way of knowing whether the person who'd be running my son's group would be someone covered or not covered, but hey, want to schedule an intake appointment anyway, because why are you getting hung up on whether this group is affordable, you self-centered mom who only cares about paying the bills? Isn't your son worth all your savings?

Sorry, I might be over-extrapolating.

After the enormous debacle of the private occupational therapy company that swore they'd take insurance but really meant they'd screw up three months' worth of invoices and then nag us to send them the cash, I'm not interested in taking on another facility that kinda sorta maybe well-it-depends takes insurance. I'm interested in dealing with actual experts who know how to file paperwork. These do not feel like high expectations.

My point? If we're going to go on and on how ADHD is real and get archly defensive about how medication is sometimes necessary, shouldn't we also go on and on about how potential alternatives to medication, or at least supplements to medication -- like OT, like social skills groups -- are either not covered by insurance or are completely unattainable? Shouldn't we also describe how trying to do the right thing for your child can frequently mean wanting to throw something at the wall? (Usually the phone.)

And our family is in a relatively good position, comparatively speaking, in that kiddo has a behavioral therapist, an IEP, a special education teacher who seems to be trying hard to do right by him and relatives who support him without carping that ADHD isn't real. Yet still some days are a trial.

So you'll forgive me if I'm not precisely on the awareness bandwagon. I guess I'm sitting in the corner going, "But what does all this mean to me?" And if that's self-centered, well, so be it. Possibly I'm not the activist type. More of the "get things done so I can go to bed" type.

Anyhow. In the interest of absolute fairness, here's the official link to ADHD Awareness Month. By all means, decide for yourself about it.

On spooky things

One of the utterly fun (and by this I mean frequently exasperating) things about parenting a kid with anxiety issues is that he is scared. Of. Everything. Of being in a room by himself, anytime, ever. Of unexplainable noises. Of seeing "The Wizard of Oz" even though he's already read the book and seen the play version. Come on, kiddo, we have it on Blu-ray! You already know the ending! (It's been a point of contention.)

October, obviously, is not the best month for us.

Kiddo is scared of the spooky placemats on our dining room table. He had a near-meltdown in front of the Halloween store because of the scary clown mannequin parked in a chair near the entrance, and the only way I even got him in the store was by telling him to close his eyes and grab my hand. He is, every year, so freaked out by any sort of spooky-ooky house decoration that he will refuse to go near the front door even though there is candy waiting.

And while part of my frustration is that I feel bad for him and want to help him not be scared, the rest is totally that I love Halloween. I like spooky things. I was reading Poe in grade school. (Admittedly, probably not a good idea.) Neil Gaiman is one of my favorite writers. "Buffy the Vampire Slayer" is -- still -- my favorite TV show. I like over-the-top gravestone-bedecked houses. I like gap-toothed jack o' lanterns. I like "The Monster Mash."

I guess I'm just baffled that my love of these things did not, in any way, genetically pass on to my son.

His behavioral therapist has been working with him on the anxiety issue. And I've been trying, gently, to put things in perspective for him.

I told him all about the first haunted house I remember ever going to, and how I was secretly terrified of all the ghosties and eerie candles and things jumping out at me, but I didn't want anyone to know that, so I skipped my way through chanting, "I'm not scared, I'm not scared." At least I think I skipped.

Kiddo was fascinated. Now he wants me to tell him about every single haunted house I've ever entered, ever, and what I saw there, and was it scary.

So I've told him about the haunted house his Aunt C.'s church put on, and how we saw her there, and she stopped pretending to stab a roll of paper towels to say hi to us. (Sorry, C. I'm sure you're thrilled I told that one.) I've told him about the Haunted Mansion at Disney World, and how the floor drops in one room and you see more of the silly-spooky pictures on the walls. DH reminded me about the haunted house and maze at Sterling Forest.

I don't know if it's helping, these haunted house stories. At least kiddo sees that we went in them and lived to tell the tale.

Maybe he never gets into Halloween. Maybe it's too much to ask of him. But I hate the idea of October being this trial for him, something he has to close his eyes and cover his ears just to get through.

He does like the candy, though. So there's that.

The other table

The problem with the back-room tables at IHOP is that they're sort of connected, half-booth half-table, and there is absolutely no way to stay out of other people's space. This irks me. I value my space. And also I'm used to worrying about my kids in public spaces, because of their complete inability to speak softly or to get through a single restaurant meal without lying down on the seat or all over each other, and giggling.

It's a bit of an irony for an introvert like me to have two such extroverted kids. I'm constantly thinking "Stop drawing ATTENTION to yourself!" even though I know the vast majority of people find the kids charming.

So we were sitting there in our table/booth hybrid and a cluster of young folks sat next to us. Now I was worried about youthful eye-rolling and secret young-person pity for the old lady with the annoying kids. They got to talking -- and I couldn't have tuned this out if I'd wanted to -- and my heart just melted.

One of the boys was discussing his mom's ongoing fight to get alimony payments from his dad. Apparently Dad was claiming that his son didn't need the cash anymore, because he's all grown up and has a job and everything. The boy said no, Dad knows he has mental problems and doesn't have a job and is living with his grandmother. Dad, apparently, goes to great lengths to not hand over any cash. The boy's friends commiserated.

I felt so bad for the kid. His parents were fighting, his dad didn't want to help him, he didn't sound remotely ready to solve his own problems. He had no idea what to do next, and he couldn't have been older than 21.

If your parents aren't acting like grown-ups, how are you supposed to figure out how to do it?

The kids and I, meanwhile, having finished our discussion of the relative merits of various Muppet movies, got up to go. "Bye!" kiddette said to the kids next door. They all laughed, and the lone girl at the table, a pretty blonde, said, "Bye!" right back.

They seemed like nice young folks. I hope they turn out OK.

179 to go

The first day of school, as far as I can tell, went well. I say that because this is how the conversation with the kids went:

Me: "Did you have a good day?"

Kids: "Yes!"

Me: "What did you do?"

Kids: "I don't know."

Me: "Who else is in your class?"

Kids: "I don't remember."

Hey thanks, kids, glad we had this talk.

DH reported that kiddette somehow managed to follow the first-graders right into their classroom, briefly fooling the teacher, and then needed to be brought back to her rightful kindergarten class. Which surprises me not at all. Wherever kiddette is, obviously that's where she should be, and of course everyone should be delighted to see her.

Today, she insisted on standing bus-lookout at the corner, and was the first one on. She said she couldn't wait for "a new adventure today" in kindergarten. That's my little Hermione. (This is actually a compliment.)

The smaller bus, per kiddo's brand-new IEP, seems to be working out fine. He runs right onto it. There are only a couple other kids on it, and an aide, so we shouldn't (I think) have any overstimulation/bad behavior issues. The only possible issue: There are a bunch of neighborhood kids at our bus stop, and kiddo is the only one who gets on this bus. I haven't explained why to the other moms yet. Usually I have no problem saying "Yes, my son has ADHD, I'm sure you can tell from all the running around," because if I'm going to acknowledge it, I'm going to crack a joke in the process. But I did that at a party over the weekend and DH wasn't thrilled; he thinks I'm setting kiddo up to be pre-judged. Maybe. So I decided that if the moms ask, I'll explain, and if not, I won't. Anyway no one seems bothered. His bus arrives first, so today the other moms helped me holler at him to quit goofing with his friends and get on. He yelped, came streaking down the sidewalk and jumped on the bus.

I haven't sent in the weighted vest yet, because 1. it's hot in that school and 2. the vest is actually in kind of sad shape. It's missing a snap and I'm not sure I can fix it. Sewing? Not one of my major skills. I fail the Martha Stewart School of Domestic Perfection.

I ran right from first-day dropoff to meeting with our new behavioral therapist. We had a good conversation; she seems nice so I'm hoping she can help. I did have to explain to her what "social communication disorder" is -- THAT'S how new the term is, if parents know more about it than the professionals.

And I've spent approximately the last week fighting with the pediatric psychiatrist's office about getting kiddo's records, so that we can bring them to the new practice. In the span of three phone calls, I heard "Sure, we can get those together for you," "Oh, you need to come in and fill out a form, and then the form needs to be approved by the head of the practice and by the other departments, and oh by the way it'll take two weeks," and "Oh, we charge 25 cents a page, do you still want all the records? He's been coming here a while. Oh, just the medication records? OK, you need to fix the form then." Thus perfectly illustrating why I went and found a new practice in the first place. Well, that and the fact that our regular psychiatrist has been MIA, no explanation given, for three-plus months and the head of the practice wasn't interested in having actual conversations with us despite the brand-new diagnosis, and recommendation on meds, we'd just gotten from the independent evaluation requested by the school. (He finally suggested we discuss a plan for the school year at our final meeting last week, apparently not cluing in that I meant it to be the final meeting. I politely explained that we'd be having that discussion with the next psychiatrist.)

I sincerely hope this round of doctors and therapists is more helpful than the last round. This just gets exhausting.

So we'll call things cautiously optimistic, and see how it goes.

It's just crazy

Every single time something involving mental illness or mental issues becomes news -- say, someone with a psychiatric history gets into a shootout with police, or a beloved celebrity kills himself -- noted experts always weigh in to say they hope the greater awareness of these issues will help "change the stigma" of mental illness. As though "changing the stigma" is also going to increase access to mental health professionals and give people the cash to afford such professionals. Not to mention, absolutely ensure that therapy/medication/neurofeedback/deep breathing is going to be the exact thing the patient needs. Sure, that's all it takes obviously.

But every single time I hear experts talking about "changing the stigma" I can't help but feel like those experts don't listen to how people talk.

"Man, that party was crazy!"

"That girl is nuts."

"All the traffic was making me insane."

"Getting the kids to school today was just total madness."

And that's just the general terminology. We can get more specific.

"He is so anal-retentive about cleaning the dishes."

"Did I lock the door? I get so OCD about that stuff."

"I'm doing 15 things at once today, I'm just completely ADD right now."

"I'm so depressed that summer is over."

"This show is funny and sad and funny and sad. It's totally bipolar."

Now I'm not interested in being The Word Police. I've used some of the above terms and I'm absolutely not holier than thou (or anyone else). But you can't exactly change the stigma of mental illness, or mental disorders, when the language of mental health has been co-opted as slang. When the terms used to describe mental illness or mental disorders are being used, on a regular basis, as jokes.

I don't know how to change that. People dislike being told they can't use this word or that word and then they go on rants about political correctness and how no one is allowed to hurt anyone's feelings anymore and society is stifling them and blah blah. But I do think occasionally reminding people what those words actually mean, and that these are disorders people legitimately suffer from, might -- maybe? -- bring a little bit of understanding.

At any rate, it would make for a more interesting conversation than constantly parroted repetitions of "We have to change the stigma!"

Is the kid alright?

I mean, I hope so. We've worked pretty hard to make him so, the past couple of years, after discovering that the moodiness and the excessive energy and the inability to focus and the inability to hear what people were saying to him added up to a diagnosis. We've continued to work on it even when I swear every single medical professional we've reached out to has somehow punked out on us. For example:

1. The occupational therapy facility promised they knew how to work with insurance companies, then completely mis-filed three months' worth of invoices, then called me in a panic, said kiddo couldn't come back until the money was paid because lots of other people owed them money too and they might have to shut down, and could we give them some cash up-front and they'd pay us back? A year-plus later, we got everything paid off by submitting every single claim ourselves, and had to explain to them that deciding to tack on extra money to your claim because gosh you had to spend all that time on the phone with the insurer is not, generally speaking, allowed. Kiddo never did get to go back there.

2. The pediatric psychiatrist has been MIA for two months' worth of appointments, which is doubly frustrating because I've wanted to go over the evaluation from the school's psychiatrist with her to see if we should change anything. We've gotten stuck with a different psychiatrist in the office instead, who spends .5 seconds discussing kiddo with me and then hands me the pre-written prescription. I'm looking for another practice.

3. The first behavioral therapist kicked things off by announcing, "I don't believe in medication." So when she also stopped believing in taking our insurance, I didn't fight hard to stay with her -- even though she did offer useful advice -- because by then, we'd come to believe that kiddo did need medication, and our belief and her belief seemed like irreconcilable differences.

4. The new behavioral therapist, whom we'd seen precisely once, was removed from our insurer's list in February. Unfortunately the office only discovered that TODAY. Less than a day before we were supposed to have our second appointment. I am not a loud person, but you probably could've heard me yelling at the office manager from three blocks away. I am, obviously, looking for another practice.

Practice makes perfect? I'd settle for practice makes competent.

And yet I know all the aggravation will be worth it in the end, if kiddo learns social skills, if he finds a way to settle in school, if his executive function skills improve, if he learns how to keep calm and carry on.

But it still knocked me for a loop when I heard about Robin Williams.

Now he was, despite what certain websites suggest, never officially diagnosed with ADHD that I can tell. (Or bipolar disorder for that matter.) His official issues were drug and alcohol addiction, and depression, at varying times. But if you ever watched him do stand-up -- as I absolutely did growing up, and loved it -- you had to have noticed the bam-bam-bam cracked-whip intensity of his performance, just a little moreso than other comics. Or maybe you watched "Aladdin" and marveled at how the animators were even able to keep up with his voice.

Plus there's his reasons for using cocaine. This is what he told People magazine:

"Cocaine for me," Williams told People in 1988, "was a place to hide. Most people get hyper on coke. It slowed me down." 

Who slows down on cocaine? Exactly how quickly does your brain need to be racing?

I feel like, whatever his mental issues really were, they weren't being properly treated. And if a universally beloved, massively successful TV and film star can't get the help he needs to keep his brain in check ... well, where does that leave the rest of us?

I mean, I can't even find a therapist for kiddo who takes our insurance for longer than a nanosecond.

I have to hope that what we're doing is going to pay off in the long run. I have to keep to the notion that previous generations flat out didn't know what to do about mental illness or mental disorders, and so did nothing. I have to hope that the whole "mental illness=moral failing" attitude is disappearing, because who could look at Robin Williams and say his whole problem was a moral failing?

I am never going to be able to watch "Aladdin" again without crying.

On the way in to work today, the radio station, randomly, played the Who: "The Kids Are Alright."

Yeah. I hope so.

In which we get good news and then hit the beach

The good news being, kiddo will have an IEP next year, or more accurately, in about a month. It's a pretty extensive accommodation plan, and I'm hoping it'll help him get through the school day in more or less one piece. Delighted that the school officials seem to see kiddo for who he really is, and what he's really capable of, and we didn't have to fight for the help. Though to be fair, the school officials seemed equally delighted that we were so upfront about kiddo's issues, and what would and would not help him. Apparently there was this one time when they informed a parent her child was eligible for special education services, and the parent, who had apparently not been expecting this news, burst into tears. I sensed a bit of relief in the room that I would not be bursting into tears.

Frankly I'm relieved we're getting the accommodations, because then maybe kiddo will be able to, say, do his math classwork instead of hiding under his desk, or participate in gym (or Phys. Ed. or whatever they call it these days) instead of sitting in time out for getting too physical/not listening to the teacher/running around too much/whatever else he was getting in trouble for because I've lost track a little. Stigma shmigma. Why make him suffer through school if he doesn't have to?

Naturally, the first person to make a "short bus" joke in front of me is going to have to run and hide.

Having gotten that settled, we left for vacation, which was a multi-part affair. First we went to Point Pleasant and were issued a parking ticket even though we'd paid for parking and properly displayed the receipt. If DH wishes to contest the ticket, he can find some way to show up for the court date. How nice. You know, Point Pleasant, my husband grew up vacationing on Nantucket and he is already not impressed by your Jersey Shore-ness. Thanks for ensuring he'll never want to visit you again. Sad for me, since Point Pleasant and Seaside Heights basically defined my high school years, but it's hard to argue with an obnoxiously unwarranted parking ticket.

And that was before the car battery died. I was expecting the cop to walk back and give us another ticket for, I don't know, not having the proper dead-battery permit?

One new battery later, we headed up to Cooperstown, where the kids tore through the Baseball Museum in about .5 seconds. Historic uniforms and interesting stats are apparently not too interesting to the kids right now. They were much more interested in the ducks wandering past our table at dinner, which was right on the lake. Also, in the hot dogs. So at least they ate baseball food.

On to Grandma's house, where the kids practically pushed us out the door so they could have Mom- and Dad-free fun with Grandma. DH and I made our way over to Massachusetts, where we met up with relatives (thanks for the fun dinner, cousins!), then hung around Cape Cod (the flea market in Wellfleet is huge), then took the ferry over to Nantucket for a day. And here's where you really lose out, Point Pleasant: The beaches are nicer up north. No cigarette butts in the sand. No fee to get on the beach. Lots of shells for beachcombers (aka me). Gentle waves. No crowds even in July. I mean I can't even make the argument. It's frustrating for this lifelong Jersey girl but I think I may have been shortchanging myself on the beach experience. I'm hoping it's possible to get that experience somewhere closer than New England.

At any rate we had a fine time. We biked everywhere and ate fried seafood and made it out to the Downyflake for their utterly perfect doughnuts. We did a lot of road-tripping and random winery visits and made silly snarky comments about whatever five songs were on the radio. The kids also had a fine time, and I think Grandma may have recovered from their visit by now, but I wouldn't swear to it.

We got back yesterday. This morning, kiddo and I had our first appointment with his new behavioral therapist. And thus we get back to routine.