You Need a Village

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

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😉

Waiting for Sunshine and Roses

It’s been a tough week.

Somewhere there’s a list of life events that can bring you to your knees and if moving isn’t at the top, it should be. Moving into almost-finished new construction with only two adults, a pickup and a Hyundai wagon. In 90 degree heat. When one of the adults considers the other “a hoarder” for having stuff… Yeah, “stressful” is one word for it.

(Thank goodness for Poppy’s mad vacuuming and cleaning skills, and Grammy’s mad Boy-entertaining skills!)

And you’ve accomplished this monumental thing, moving an entire house in two days on top of constructing said paid-for home from the ground up, but you are surrounded by boxes and missing shower curtain rings, and where-the-hell-am-I-going-to-put-that stuff. (I swear I’m not a hoarder!)

Then comes an unexpected, HUGE bill in the mail to take the wind right out of your sails, and evaporates any semblance of excitement you had left, and you wonder how anyone ever gets a leg up…

Then one of The Boy’s best friends decides he doesn’t want to go to summer day camp anymore, and his absences begin to trigger meltdowns and anxiety every night and morning. The Boy lashes out and threatens not to go himself, even though he absolutely adores it.

And you’re supposed to go to work and do work things correctly when you haven’t had a good night’s sleep in over a week, you haven’t eaten since you opened that huge bill, and you’ve taxed your body to the limit. The worry and overwhelm seem to be taxing your brain even more.

Everyone around you is worried, too. Either about the same things as you, or about you, and there’s nothing to say or do. You just keep going. There’s no time or money to do anything else. And crying gets old. Deep down, you know this too shall pass, so you just continue to be until it gets better.

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

Our House

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This gallery contains 14 photos.

Last spring, The Man and I bought a lot which would put us safely within the boundaries of the high school The Boy was supposed to go to before the district abandoned the HFA program at his middle school. It … Continue reading

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.

All Quiet on the Northern Front

On Father’s Day, we were up north, but I made sure The Boy called his dad. He spoke with him briefly, spoke to both of his uncles briefly, and spoke to his grandpa briefly. The call lasted 7 minutes.

I tried to think back to the last time they had spoken, and couldn’t think of a time since he had dropped The Boy off with us in January, at the end of his winter break. I checked my phone bill and I was wrong.  He did call once in March, and they spoke for 9 minutes.

For those of you keeping score, that’s 16 minutes in 6 months.

There hasn’t been any attempt to get any time with The Boy for the summer break, and there has been no discussion of when the next visitation might occur. Maybe it’s because I told him unequivocally in January that The Boy flying alone on a plane wasn’t going to happen any time soon. “It’s not a good idea,” were my exact words.

Is this the beginning of the end? One initiated contact in the past 6 months?

I don’t have any words. Just sadness.

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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 Matters7/17/08; 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 Matters10/21/1410/26/14]
  • 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.