Tag Archives: Autism Spectrum

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.

 

Has this Happened to You?

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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. 😉

Eyes Averted

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After The Boy’s final band concert for the year, I anticipated a meltdown. His TA had asked his friends-who-are-girls to make sure to high-five him before they left, but I knew they wouldn’t. I tried to prepare him for it several days in advance, even getting a promise that he wouldn’t get upset because he knew he would see them the next day. But when he was done, the panic set in, and he wound up, eventually returning to the stage area (where many people remained, clearing the stage), throwing his binder, and then his mouthpiece (a small but heavy hunk of metal).

Everyone around us gasped, and then went about their business in more hushed tones. One kind soul retrieved the now-dented mouthpiece, and I thanked this person without looking at him.

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And I realized that I don’t even attempt to make eye contact as any of this goes down. I never do. Am I embarrassed?, I kept asking myself days after the realization. It would be ok if I was, but I generally don’t care what others think of me or my son. I had thought myself way past that stage.

After much soul-searching, I found that it wasn’t embarrassment that made me avert my eyes. No. I just don’t want to deal with everyone else’s reactions. I have enough to deal with, and it isn’t my job to comfort/explain/respond to whatever it is you are feeling upon witnessing my son’s autism in full color. It is my job to relieve his anxieties and calm him.

And if I look into your eyes, I will have to deal with whatever I find there.

I can multitask with the best of them, but not during a meltdown. He is my focus, and everything else is secondary, especially the thoughts of others.

So if you encounter a parent like me who won’t look at you in this situation, they may be embarrassed, or they may just not be ready to deal with you. If you are a parent in a situation like this, you don’t have to worry about anyone but your kiddo. S/he’s the one that needs you most, right then. Even if they are throwing hunks of metal at you.

 

Acceptance Begins with Our Own

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I have a friend with a young daughter on the spectrum. She regularly posts on FaceBook about her struggles with her daughter, and how she loves her daughter but hates autism. She complains that they often have to leave school events early, and just once she wished she could stay through a whole event and watch all of her children.

I admit that I only have one, and he is relatively high functioning.

I also remember feeling that way.

And I was a single mom.

(I know not everyone will agree with me, as this is a major point of contention within the autism community, and the line drawn seems to coincide with functioning levels. Autism is a struggle for most, and parents will spend our whole lives trying to figure our kiddos out. This opinion is based on my own experiences.)

At some point, though, there was a shift for me. The more “battles” you have to choose whether or not it’s worth it to fight, you begin to see hypocrisy all around you. You begin to question the structure and rules in our society, and how arbitrary they seem. Why do you have to keep your shoes on during a play? Is it really that big a deal if someone wears the same shirt everyday, as long as it’s clean (I’m looking at you, Troy Landry)? Do I really have to worry so much about the guy with the white beard being approached by my child who thinks he’s Santa?

You begin to think about the fundamental difference between children and adults, and how boring we all get. How we lose that sense of creativity and wonder. And how freeing it can be to not have to worry about all of that stuff.

My friend made a comment in her last post about the fact that her daughter needs to adjust to the world, and not the other way around. I respectfully disagree. Yes, we have to teach them to adapt to the best of our (and their) abilities. But. There are enough of us to really make a positive change here, and we have to stop being so hard on our kiddos. We have to start being harder on this cold, dead world that has a vice grip on its arbitrary social structures and rules.

My friend says she’s tired of it (autism), and that she’s exhausted. The fact is, my friend’s daughter will never lose her autism, but the rest of us neurotypicals only need a shift in perspective to allow her to be who she is.

And we need to accept our own kiddos as they are if we ever hope the world to accept them, too.

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