Tag Archives: ASD

Inclusion Starts with “Hello!”

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Thursday night, The Boy and I ventured to one of the marching band rehearsals from which he has been excused, due to logistics and conflicts with summer day camp. We wanted to just stop in and possibly say hi, meet some people, help with the transition. I made arrangements to leave work early so I could pick him up and get him there before it was over. We arrived and discovered the brass section in the band room. I told The Boy we would wait until they were on break to enter, so as not to disturb them. After waiting for a good bit with no break, he wanted to find the woodwind section to see how many of his friends from last year were in attendance.

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He loves it so much..

We found them in the library and were welcomed in by the band director. We sat and listened for a bit, and decided to head back to see if the brass were on break. They were, so we walked in, and The Boy’s middle school director was at the front of the room. I can’t quite describe the look he gave us when we walked in, but it was not pleasant. He didn’t say anything – not, “Hello,” not “Hey,” – nothing. No welcome, and no introduction for The Boy to this room full of kids who didn’t know who he was, save for a few. The Boy, oblivious, walked over to one of his friends and gave her a hug as she sat, and then I suggested we leave again, as our presence certainly did not seem to be welcome. We went back to the library and the woodwinds were being released back to the band room for a full rehearsal. The high school band director greeted The Boy again, and The Boy talked his ear off the whole way back to the band room. We listened for a bit to the full band play, and suggested again that we leave before everyone was released, and The Boy agreed.

He may be oblivious, but I am not.

While thankful the high school band director at least had the sense to appear welcoming, I’m sad that none of the high school students had the wherewithal to introduce themselves to The Boy. I’m disappointed that not one of the three drum majors, students in high levels of leadership, recognized their duty to welcome a member, albeit a non-traditional one. I’m livid that a professional educator who taught my son for two years cannot even greet him, and would go out of his way to make him feel unwelcome.

And right now I’m at a loss. I knew this wasn’t a terribly inclusive group to begin with, based on The Boy’s friend’s experience last year, who is also on the spectrum, and lacked a single friend in the group even at the end of the season. I knew I wouldn’t gain any friends by forcing our way into the group, even with the weight of the law and human decency behind us. But I have not been so uncomfortable, and made to feel so incredibly unwelcome since I encountered mean girls in my own middle school experience. It was that palpable. Do I try to educate and advocate? Do I engage outside help either from school administration, the autism society, or the state band directors association?

Or do I give up?

Is this really worth it?

I don’t know. All I know is that this shouldn’t be.

Nice to Hear

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Yesterday, I emailed the Amazing Camp Director, new member of The Boy’s tribe, to let her know that I would be picking him up today so I could get him to the tail end of marching band practice this evening so he could show his face and begin to make some connections there. I also let her know how much The Boy appreciates her, because I think it’s important to let people know when they’ve touched your life.

She responded: “The Boy is awesome!! Seeing him puts a HUGE smile on my face!! He re-supplies the bubbles & he’s doing a fantastic job! His counselor left early today & won’t be in Thurs or Friday … He was great about asking who his counselor would be, I loved that he didn’t allow the uncertainty create anxiety (he may have been anxious but he knew to ask!!!) I explained it’s always so difficult because everyone wants to spend the day with him but (the substitute counselor) was the lucky one this time😀 he gave me the biggest smile & hug!! He truly brightens my day!!”

I’ve written before about what a mystery my child’s day is to me because he isn’t so verbal about what happens at school/camp. Notes like this not only warm my heart (he really does make fans of everyone who gets to know him!), but give me a glimpse into his day, his thoughts, his personhood. Notes like this are also a sign of a great educator and a wonderful person. ❤

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You Need a Village

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Yesterday was a classic Monday.  One little change to our routine made me about five minutes behind, which ended up with our leaving The Boy’s lunch on the counter, and my breakfast behind. The night before, we had also realized that we had left his swim trunks and rash guard at Grammy’s the previous Friday, which meant she had to throw them in the dryer so he could change into them when he arrived to her house.

Needless to say, Grammy made sure he had dry swim clothes and a full lunch for camp on Monday. Without her help, we would have encountered major interruption to the day, and in all probability, a meltdown to go with it (maybe two, if mine count).

While I don’t have a ton of friends down here to rely on, I do have my parents, and we need them. Everyone needs a village. When we lived up north, I relied on friends and The Boy’s tribe. There are times when you can’t do it all, when things fall through the cracks, and when you just need a damned break.

It’s a difficult thing to find and build your village, but it’s very necessary. I just don’t know how I could do it without some kind of support (besides my wonderful husband – sometimes even the two of us need additional hands!). And I don’t pretend it’s easy. The very nature of a special needs household may preclude being social with other families on any kind of a regular basis. But there is always a way. Don’t forget that I found Fantastic Babysitter (who is now one of our dearest family friends, and was/is a huge part of The Boy’s tribe) on Craigslist…

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New Member of The Boy’s Tribe

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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 school 😉

My Reflection

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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.

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The Truth is

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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

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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

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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

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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.