New Member of The Boy’s Tribe

The Boy adores his new summer day camp. They go swimming at the community pool three times a week, he has friends from school who attend, and they play Wii bowling – what’s not to love?

He also has a new member of his tribe. The camp director is a high school special education teacher from another school in the community, and she is amazing. Wanna know how I know? The Boy gets a huge smile on his face when I mention her, and he doesn’t do that for everyone.

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As I mentioned yesterday, he’s having some anxiety over absences again, exacerbated by one of his close friends being ambivalent about camp and intermittent with his attendance. Not only did the camp director figure out a way to entice his friend to come to camp (allowing him to do a few magic shows at camp), she has figured out a strategy to alleviate some of The Boy’s anxiety. She reasoned that his anxiety stems from not having control over whether or not others are absent, so why not allow him a little control over something else?

She said he is always letting her know when supplies are low (which is great because the staff does not), so she could have him do a daily inventory of supplies (and even campers!) with a clipboard. By allowing him input in tracking, it may alleviate some of his anxiety.

This, THIS, is the sign of a great teacher. One who actively thinks about her students and their needs, even outside of school (or camp) hours, and devises needs-based strategies to help them with their daily functioning and emotional state.

So, welcome to the tribe, Camp Director! The Boy can spot the good ones a mile away. Now we just have to get you to come over to our high schoolūüėČ

My Reflection

This morning, pulling out after dropping The Boy off at Grammy’s, I actually thought, “Why do we always have rough mornings when I am the most stressed?”

I must be new here.

Autism knows no time schedule. It doesn’t take a break because I have a million things to do between now and this weekend, and not enough hours in the day to do them. Nor does it sit back and say, “Your right. This is completely irrational and poorly timed.” It is what it is, whenever the hell it wants to be.

But there’s more to it than that. The Boy doesn’t get upset and wound up in spite of my stress. He gets upset and wound up because of it. There’s no lack of empathy – that’s a complete myth. There is an overabundance of it. The Boy picks up on my stress, nervousness, anxiety, and mirrors it right back to me.

For some reason, this is a lesson I find myself having to re-learn again and again. Someday I’ll catch on.

stress by bottled_void

The Truth is

We’ve been settling into our new summer routine this week, as The Boy’s Summer Day Camp run by the Autism Society started on Monday. We are working out our timing and logistics to get him there and get him home, and allow him time to transition. He has been rolling with it.

Until today.

Literally seconds before we were to walk out the door, he complained that he couldn’t find his key.

Uh-oh.

He has a collection of mis-cut keys from the hardware store and he pretends that each belongs to a vehicle that he “owns.” The various vehicles come in and out of favor, but he never forgets one. His pretend vehicle du jour is a Dodge Ram van that has been retro-fitted to be an ice cream truck. And apparently, he misplaced the key at some point between the time he left camp yesterday¬†and the second we were leaving the house this morning. Unbeknownst to me.

90% of the time he has misplace something, he ends up finding it at Grammy’s house, usually under the bed. I tired to encourage The Boy to “look again” at Grammy’s and if he didn’t find it there, to “look again” at Camp, and we would “look again” at home this evening before we determined that it was “gone forever” and he would have to “get a new vehicle”. He insisted he had already looked, and it was gone. (If your kiddo is anything like mine, he scans the room at eye level and if he doesn’t see¬†the thing he is looking for, it has grown legs and walked away. Heaven forbid he actually pick up the myriad things on the floor to look underneath for the missing thing.) He said he didn’t want to go to camp and began making a general ruckus. Then miraculously, the key¬†appeared there at the end of the bed, even though Grammy knew it hadn’t been there before…

The thing is, we can try to prevent meltdowns all we want, but sometimes, they just come flying at you like a brick out of nowhere. And you just have to roll with it the best you can, and try to de-escalate the situation and keep your wits about you, always thinking about the next possible steps. We’re “if-then”-ning in our heads the whole time, instantly coming up with plans b-g just for every contingency. Would it have helped if I had helped him prepare for camp the night before? Maybe. But knowing my kid, even if we put the key in a safe spot last night, that doesn’t guarantee he gets it out after bedtime and moves it. And it doesn’t guarantee that it wouldn’t have been something else he decided he needed at the very last minute this morning.

The truth is, sometimes your best option is to just roll with it and forgive yourself for not having seen the brick before it hit you in the head. Sometimes bricks happen.Keys to the Sonic

What It Means to Be Not-Quite-Verbal

The Boy's self portraitThe Boy is verbal. He can speak in short and long sentences, has quite a vocabulary, and is an incredible speller. But not always.

When he was a toddler, he didn’t have as many words as his peers, and we ended up in speech therapy. We used flash cards to get him to learn nouns and actions. He went to speech twice a week for several years.

He now loves words, and particularly loves word play, and puns and jokes where double entendres are at the center. But, there are times when he cannot speak. There are times when it seems he refuses to answer. His teachers encounter this often, and it isn’t (as they too often assume) because he doesn’t know the answer. He simply can’t.

And he wants to.

A few Halloweens ago, he was trick-or-treating with friends and I was following with another mom. A couple of giggly girls recognized The Boy, and came up to say hi. After they went off in a different direction, I asked him about them. “Who were they?” No response. Knowing he probably knew but couldn’t tell me, I tried not to make it a big deal and we continued on our way. Shortly after, we arrived at a house with two cars parked in the driveway. “Mom!” he said. “Er, look,” he said, pointing to one of the cars. “You know, the girls…” he said. He was giving me a clue, and excited he had a chance to communicate with me. After a little back and forth, I realized the car was a Lexus… and the girl’s name was “Alexis”. Then he told me the other girl’s name¬†through another clue (she had the same first name as his favorite teacher from elementary school).

If you first understand that there are times when he can’t speak, and then also understand that he wants to, and finally give him the opportunity to give you clues, communicating is possible. It requires understanding and patience, though. And discrete labels aren’t helping, either. So I’ll stick with “Not-Quite-Verbal,” and keep working towards understanding.

Tracks

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See the tracks in the picture? The ones heading toward the swing on which The Boy is perched? Look like tire tracks, right?

Nope.

They’re from The Boy himself. From walking and stimming as he does when we are home. And apparently he does it in such a repetitive fashion that you can now discern his route. The track on the right is for leaving the swing area, and the track on the left is for heading to the swing area.

Ever wonder why some of our kiddos get obsessed with train schedules and maps? With routines? Have wonderful memories for directions?

Makes me want to geotrack him…

Savage-ry

I started this blog¬†just about four years ago, and in that time, I have avoided politics as a rule. This¬†is amazing for me. If you were a friend of mine on Facebook, you would have a crystal clear picture of where I stand on most issues. I’m in the political minority where I live, and it’s uncomfortable. Others like me speak softly in restaurants, and are resigned to the fact that if you dare put up a yard sign or a bumper sticker on your car, it will be ripped off at the very least. My husband and I aren’t as afraid, and will stay what needs to be said, and¬†loudly.

But here, I try to ignore the political divide as much as possible, because if you read this blog, you care about your kids, and at the end of the day, that’s what is most important.

Now, when the country is as divided as it has ever been, I need to speak my peace for the very kids we all care about. Never has the country put forth a candidate that is downright dangerous for minority populations, especially dangerous to the special needs community.

It is common knowledge by now that Donald Trump openly mocked a disabled reporter. He claims not to have done so, but the Pulitzer Prize winning site, PolitiFact has deemed that he did, indeed, mock New York Times reporter, Serge Kovaleski. And if you watched the video with your own eyeballs, you probably came to the same conclusion.

But he has mocked just about everyone from Mexicans, to POWs, to women. Many, many women. That, in and of itself, is not dangerous. His views on autism are dangerous (he believes that vaccines cause autism, a theory that has been debunked multiple times). And the people he would look to for advice on national health policy are dangerous. In an interview with incendiary¬†radio¬†talk show host, Michael Savage, Trump said that he¬†thought that putting¬†Mr. Savage in charge of the National Institute of Health would instill “a lot of common sense” into that institution.

If you aren’t familiar with Mr. Savage’s “work,” you should be (the following is directly quoted from this article):

  • On Autism: “A Fraud, A Racket … In 99 Percent Of The Cases, It’s A Brat Who Hasn’t Been Told To Cut The Act Out.”¬†Savage claimed in 2008 that autism is “a fraud, a racket. … I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.'” ¬†[Media Matters,¬†7/17/08; ABC News,¬†7/21/08]
  • On PTSD And Depression Sufferers: “Weak,” “Narcissistic,” “Losers.”¬†Savage pushed junk science by accusing those who suffer from post-traumatic stress disorder (PTSD) and depression, including military veterans, of being “weak,” “narcissistic,” “losers.” Savage added that “we’re being laughed at around the world. No wonder ISIS can defeat our military.” [Media Matters,¬†10/21/14,¬†10/26/14]
  • On¬†Liberals Like Sen. Bernie Sanders Who Have Been Driven To “Insanity” Because Of Seltzer:¬†Savage theorized that he thinks seltzer and “the little bubbles of carbon dioxide” have poisoned liberals’ brains.¬†He added, “If I had the time, I’d go back to my scientific background and I would do an epidemiological study of the use of seltzer and liberalism and the insanity of liberalism.” [Right Wing Watch,¬†9/16/15]

If you need more reasons to be afraid of this man becoming an adviser to anyone, read this.

I already fear the unknown future for my son. I don’t need additional reasons to worry about him being considered only a “brat” who need to “straighten up” by his own government, the people who are supposed to help him and protect him.

If you know or love anyone on the spectrum, folks, this is really a no-brainer. We can’t let this happen. Share with those you love who may actually still be considering their choice.

 

The Trip Recap

The Boy and I just spent a long weekend visiting old friends and relatives up north. I had promised him three years ago when we moved away that we would visit. This year, I made it a goal to make good on my promise. When an airline opened up a new, cheap, nonstop flight, I jumped at the opportunity.

I encouraged The Boy to make a list of places he’d like to go and people he’d like to see. I coordinated with people on Facebook who wanted to see us, and planned our trip in morning-afternoon-evening chunks, allowing for travel time via rental car. Fantastic Babysitter put us up, even though she was out of town for a couple days.¬†It worked out beautifully¬†as The Boy was comfortable in her house, a place he had been many times, and we saved money on a hotel. The bonus was that the weather was gorgeous, and she lives in a quiet neighborhood, allowing us wonderful downtime at the end of each jam-packed day.

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‚̧ She hadn’t seen him since she was 3, but asked to hold his hand in the parking lot¬†

Most of our “places” to visit were really restaurants (um, yeah… we like food. A lot.), and we made a point to eat at places we just don’t have back home. Even better was the company. Every single visit¬†with friends was a joyous, picked-up-right-where-we-left-off extravaganza. The Boy had even prepared three PowerPoints (unbeknownst to me) to share with his former ASD teacher at lunch on Saturday.

The Boy was simply amazing. At our favorite eclectic arcade on Friday, one of his favorite games had been removed, and I didn’t even realize until after the fact, when he explained to me a few times that it had been moved (I put two and two together because of the perseverating on the same point). But he didn’t get upset about it. The only thing that really did upset him was that he was reminded about the glory of the ice cream truck, something we just don’t have where we live, but a treasured memory from living up north. We glimpsed one a few times during the weekend, but didn’t end up realizing his wish to purchase ice cream from one, and that was a tragedy by Sunday.

I could see fault lines forming by the time we got to the gate on Monday to get back on the plane to go home. His laptop was not charged and would not charge. It got a little hairy until I enlisted the help of the gate agent, who allowed us to use her outlet behind the desk. The rest of the day, The Boy was a bit “tetchy” about everything. He didn’t want to come home, but was mollified by a stop at his favorite arcade in Myrtle Beach before heading back home.

It was a huge success, a wonderful time, and I was incredibly proud of The Boy. The people we visited were not the only ones impressed by how much he has grown in three years.

Has this Happened to You?

You are at some school or other kid-related function, and a parent begins talking to you as if they know you. She or he prattles on about their child by first name, and your child by first name. But you’ve never met them before in your life.

IMG_4054-0I suspect this is common for those of us with kiddos on the spectrum, at least those of us whose kiddos are not-exactly-verbal. In my experience, The Boy becomes a kid at school that everyone knows, or at least knows of, but because we have limited social interaction with the same students outside of school, I know none of these kids. It is also due to the fact that The Boy is fairly nonverbal about anything that happens at school.  This is why I try to go on at least one field trip per year, so I can put names with faces.

The latest occurrence happened at an Autism Society Friend and Fun event, and I met a mom and her daughter, a girl who is a year behind The Boy in school. He’s gone to school with her for two years, so her mom assumed I knew her daughter, or at least knew her, but I had never heard her name mentioned before, and had never seen her before.

I’m clearly at a disadvantage when this happens, and never quite sure how to respond without seeming rude, and I really should come up with something to say.¬†I would love to know more of these kids and their parents. It would be great for both of us to make more connections, but it’s almost as if he is a celebrity and lives a double life.

Apparently, what happens at school stays at school, and the first rule of school? Never talk about school.ūüėČ

Paint Chips

The Man and I have both been trying to get The Boy to do a little more around the house. We finally completed several of the Independence Challenge prompts, getting The Boy to plan a meal that he would make for us (pizza, what else!), go grocery shopping for supplies, follow the directions, prep the ingredients, and cook the meal. But it took a lot of prompting.

While at the new house the other day, The Man was working on getting The Boy to water the newly planted sod. He needed him to stand there and soak the same area for a couple of minutes, and even that was difficult for The Boy to attend to for too long.

It’s a struggle, and I often worry about his future in moments like these. Will he have the patience to follow directions at a job? Will he be able to work independently without someone hovering, saying “No, it needs a few more minutes of soaking”?

https://www.flickr.com/photos/vanhoosear/24787619731/in/photolist-DLp2KZ-5xuioL-4eT3U-4W8ov6-cAxrbA-attWhH-97iCs8-ny7zGA-h4EMTf-aiF3Gc-c5aE2A-aC675a-6oE9kA-6Rg68S-bwT7eM-9E1W1R-8AnZD8-ftHg8g-pzSyRq-aC67kP-46FHiq-6fAwKJ-6Rc33V-uVWLG-97gpEp-4W8oHK-qs84Wn-7YNfA6-dLSzms-aCUMBY-mSAkXk-ecdUN2-c9gPfo-95seiy-4QsLC7-9ijb8D-atJ7Md-dUNmfn-9vu83H-61zeUH-qfXTXe-8cmoop-cyjKzy-7PKT9S-7di6cE-9vG7Jo-qGF3v-8FPySB-6Rc3Jr-8ivZMh

Paint Samples by Todd Van Hoosear

We are in the midst of painting the interiors of the new house, and struggled to find the right color, buying five $4 samples before we found the right one. Many trips to the home improvement store, sometimes with The Boy, but often without. We stopped after I picked him up from Grammy’s one night to get a fresh batch of paint chips for possible colors, after the one we had thought would be perfect was much too yellow. I was trying to be quick because we had groceries in the car and it was hot outside. Suddenly, I looked over at The Boy, and realized he was sorting the paint chips into the right slots and straightening them. No one had asked him to do it. He saw that it was kind of a mess, and he felt compelled to bring into some semblance of order.

It gave me hope. I’ll never have a definite answer to my questions about his future until the future becomes the present. But moments like this allow me to see the possibilities, and that’s enough for now.

Band Plan

I met last week with the high school band director who had attempted to tell me that he didn’t think marching band was a good idea for The Boy, based on the experiences of a boy on the spectrum that had been in it last year. By the way, that boy is a friend of ours and busted his behind for that group, and found it very difficult to make friends in this marching band, but I digress… The high school special education teacher was there too, and I’m so glad she facilitated. She looks like she will be a rockstar for The Boy, and unfortunately, he needs a¬†strong¬†advocate in his own school system.

Shockingly, the band director had changed his tune a bit, although he did point out that the middle school band director also thought marching band would not be a good idea for The Boy, either. “But I’m not closing the door…” he said. Kinda hard when my foot is wedged in it, huh?

IMG_5331I had come prepared with a list of applicable laws, just in case, and a list of modifications and alternatives. Turns out, I didn’t need the laws (since he wasn’t “closing the door”), and when I suggested the first alternative, they both seemed receptive. After hashing out¬†some details, we devised a plan: The Boy will play at Friday night football games only, and will play his sousaphone in the “pit” section, which is where the semi-stationary percussion instruments like xylophones and timpani are. This will allow him to participate without having to learn the “drill” (complicated moves), and without having to rehearse after school every day. He will be in the marching band class, but if they are not rehearsing music, the band director may send The Boy to English with the special education teacher, where he can work on any homework he may have, or get a second “dose” of a subject in which he has deficits.

And he will be in concert band in the spring, regardless of whether or not there is a second, “lower” band.

So, we have successfully shoved that damned door wide open, and created a place for my kid in their program. See how much can be accomplished with open minds at the table?