Tag Archives: Autism Spectrum

Persuasive Writing

Posted on by

3

typewriter-keys-mechanically-letters

A new strategy that the school has been using since we met for a crisis intervention plan, has been to allow The Boy to send me an email when he is overwhelmed. He can go to several designated spots, hop on the computer and email me about what’s going on or what’s bothering him.

Usually, it entails a couple of emails back and forth about someone being absent. I encourage him to stick out the day, and he does.

Monday, the conversation was a bit more lengthy:

The Boy: I need you to come pick me up from school because I got sick on the bus on Saturday and then (the band director) told me to take Monday off and also, (one of his friends) and (his TA) took today off as well. I don’t want to get the other students and teachers sick. Especially (his social studies teacher) because he missed way too much school within the past 3 months. I even thought (another friend) was out too along with (the first friend) and (his TA). That is until I saw her at her locker at the end of class. I might tell her later that I may not be able to be in Social studies. I also feel really exhausted from Saturday and out of shape and I feel like I need rest. and If you can’t come, maybe Grammy and Poppy can pick me up in the black saturn vue.

Me: I know there are a couple of people absent, but your friends would miss you if you left. I need you to try to stick it out, ok?

The Boy: I can’t just stay here. If I do, I am a little worried that I might get more people sick and then they might miss school tomorrow and besides, (the band director) told me to take today off on Saturday. It’s nothing personal. He just can’t have me getting his other band students sick. I only air high-fived and pretend hugged the girls on Saturday because I didn’t want them to miss school today, although one of them already did and that is (the first friend). So now  I feel like I need to take the rest of this day off and then come back tomorrow, also let Grammy know (the band director) told me to take this day off. and Hopefully (his TA) (and the first friend) will be back tomorrow too.

Me: I’m not sure where (his TA) is but I would guess she’ll be back tomorrow. (The first friend’s) family extended her trip in DC, so if she is not back tomorrow, she will probably be on Wednesday, but she isn’t sick.  You don’t have too much longer, Bubba. See if you can stick it out. I know it’s tough, but don’t forget that if you can last the day, Grammy is taking you to Brrberry!

There were a few more emails back and forth, and then he went back to class. As I’m writing this post, I just got another email about how only one person came back today. But the strategy seems to be working, and I was tickled to see the quality of the language, the writing, and the persuasion he used. And writing is supposed to be one of his deficits! I wonder how far he could get with a little inspired teaching!

Traveling with The Boy

Posted on by

0

Tomorrow, The Boy and I depart on a school trip to Washington DC with his band. It is a short trip – only an overnight stay, with a ridiculously early report time tomorrow (let’s hope they haven’t changed that, too), and a ridiculously late return time on Saturday evening, but those two days should be packed with fun and excitement. As long as the weather doesn’t interfere (which it might), and as long as The Boy and I can handle our anxieties about changes to the itinerary, and not being in control of our activities…

pexels-photo (1)

My anxieties stem from my former life as a band director, having taken groups on trips, and the amount of planning and forethought that should go into it. And the amount of communication with the chaperones. All of that should be happening, but as of today, I have no idea for what or whom I will be responsible. I don’t know with whom The Boy is rooming. I don’t know how seating will work on the bus. There’s a whole lot I don’t know, and that makes me anxious.

I’m anxious, too, about The Boy rooming with some other kids (how many? I don’t know…), and if he will be able to handle it. If not, he can always come to my room (I know that I’m supposed to have a single), and if they don’t like it, they can shove it where the sun don’t shine. I emailed the teacher on Tuesday just to make sure this was a fallback option, and haven’t heard back, so I take that as a yes.

The Boy is excited. He gets to travel and see some things, which he genuinely enjoys. He gets to (hopefully) hang out with some of his friends. But I hope he can roll with changes, and maybe not being able to sit by whom he would like, and maybe being put in a group of boys to sightsee, rather than his friends who are girls…

Keep your fingers crossed for us. I think we will have a good time, and I just hope we can keep our anxieties (mostly mine) at bay.

And Then

Posted on by

1

Yesterday, I wrote about the huge meltdown The Boy had on Thursday night.

And then…

On Friday, I was a mess. After the boys left in the morning, I took a deep breath and then began to cry. I journaled, because writing usually helps. I cried off and on the whole time I was getting ready for work. And I can usually talk myself down, saying, “Ok, you have to go to work now, and you can’t cry at work, so time is up. Dry your tears, and let’s get going.” That did not work on Friday, and there were a couple of moments I had to use a paper towel on my desk to wipe my tears. I texted a friend about how awful I felt.

black-and-white-person-woman-girl

It’s like the hangover after a binge. It’s inevitable, you can’t control it, and you really can’t make it go away until it’s ready to go away.

This is why people say that parenting a chid on the spectrum is like having PTSD. I think in my case, it’s more accurate likening it to chronic stress. Either way, it’s not a good thing, and we who deal with it have to be real careful not to ignore it.

To myself and others who deal with this kind of thing:

  1. Take the day off, if you can. It adds more stress to try to be “on” for others and shut those emotions out, and if you can give yourself a day to recover and process, then please do it.
  2. If you can’t take “the day after” off work, at least take it easy, and find something to take your mind off the meltdown. Replaying it over and over in your mind doesn’t usually do much good.
  3. Pat yourself on the back for doing the best you could under the circumstances. You and I both know people who would not be able to do what we do.
  4. Plan some sort of treat for yourself during the day. Something to look forward to, and something positive.
  5. When you have time, express it somehow. Journal, paint, talk to loved ones and friends who get it. Write a letter to yourself and send it, or burn it. Do something with all of that. If you don’t do this, it will fester.
  6. Make sure you are taking time for yourself somehow in your daily life. I know how difficult it can be, but even if you lock yourself in the bathroom for half an hour a week to read magazines, you just have to find some time for yourself to get away from the relentless needs of your child. I think this step helps us find strength when the big ones hit, too.

This is just my advice, from my experience. It’s not an exhaustive list, and frankly, I’m working on many of these, too. Meltdowns are difficult for the kiddo, and the parents, and aftershocks can be felt for days, weeks, and months afterwards. They’re not going going to go away, but we can mitigate the effects with a plan in place. That’s what we autism parents are best at, right? Planning? 😉

He Melted

Posted on by

1

Last Sunday, I found a flyer in The Boy’s backpack that said he had a performance this past Thursday, at the orientation for incoming 6th graders. I was a little annoyed at the lack of advance notice, but we rolled with it. I made sure his band shirt was clean, cancelled my Thursday lesson, and made arrangements for transporting his tuba.

Thursday evening came, and I picked The Boy up at Grammy’s. We rode out to his school, and I reminded him that it was ok if he didn’t see all of his friends after the concert (which has been a big source of anxiety and mini-meltdowns in the parking lot after events like this all year). He was anxious about it, but at least we were talking about it. When we got to the school, there were curiously no parking spots, so we parked a ways away, and headed toward the gym. As we got closer, I could hear drums, and I knew we were in trouble. Sure enough, we walked in, and his band was already playing. We waited for the song to be over, and I tried to get him set up behind the band, in the percussion section, quickly so that he could play along with at least the next song. He wasn’t having it, and knocked his binder to the floor. He was angry and feeling left out, and rightfully so. “I missed it! They played without me!” I told him I must have read the flyer wrong, and asked if he wanted to leave.

After the performance, the principal released the 5th grade families to tour the building on their own, and The Boy just lost it. He began walking quickly, shoving people out of his way, giving me the finger, saying he was going to throw his tuba at his band director and cut off his head. I could do nothing but follow and apologize to the people he was shoving out of the way. Apparently, at one point I got too close, because he grabbed me by the neck and shoved me against some bleachers, knocking my glasses off. I picked them up and continued after him. After much walking around the school, and a few hugs from band friends he saw, we headed back to the gym, where he did pick up his tuba and threw it across the gym floor towards his teacher, who was speaking with a woman at the time, and it hit her in the ankles. Again I apologized, and attempted to get The Boy to sit. He did, and the band director approached, hoping to assist me in calming him down. At this point, he revealed that it was, indeed, his fault. That the time had changed and he had announced it in class, but failed to let me know.

The Boy was still agitated, and got up to leave the gym again. But this time, it was for the parking lot. He was calming, and we were heading to the car. I had called The Man at some point for help, and he was on his way, although I’m not sure what kind of help I was looking for. I began to cry. The Boy asked why, and I said, “Because I hate to see you this way.”

We ended up leaving his tuba and music there – let them deal with it for now, and headed home where it took about an hour for The Boy to calm down. By then, he was ready for pizza, and even played my trumpet a bit.

This didn’t have to happen. I’ve told school personnel, including the band director for multiple years that The Boy cannot reiterate to me what is said at school. Apparently saying it ad infinitum is not sufficient. But the band director learned from this. He apologized three times that night (and not once did I say it was “ok”), and called on Friday to express his apology again. I can forgive a young teacher who knows he messed up big time, if it looks like he learned from it. I cannot forgive the principal and assistant principal who initiated the change, made no accommodation for affected students (how many robocalls do I get from the school per week, and this wasn’t on any of them?), and didn’t lift a finger to do a thing on Thursday night. In any school, the buck stops with the principal, and this woman and I are like oil and water. She is not my friend, nor is she a friend to any special needs student. And she quite likely will be the subject of a letter to the Superintendent before the end of the year.

In any case, we are lucky that we do not experience these catastrophic meltdowns on a more frequent basis. The last time something like this happened, The Boy was about 10. The problem is, he is now almost 15 and bigger than me, and can apparently remove me as an obstacle (or at least attempt to). This scared The Man, but not me. It just is.

But it is a helpless feeling, and it is something that requires recovery.

vintage-music-closed-shop

 

Kreed

Posted on by

1

I follow several blogs and facebook pages related to autism, as I’m sure most of you do, as well. Maddox from Maddox’s Autism Chronicles cracks me up on an almost daily basis. Melon and Boy from Cat on a Trampoline are a constant source of amazement, and their mom can be relied on for some seriously hilarious writing. Casey from Conversations with Casey is such a joyful spirit, and his mom is quite funny, too. But I’m here to tell you about Kreed.

Kreed from Kreed’s World, a Complex Journey through Autism is a handsome young man who is nonverbal but has recently been able to communicate with the world through his device. His mom, Erin, also shows the world what living life in an autism household is really like, when your child with autism rages and self-harms at times. Kreed has a whole host of medical issues, and is currently in the hospital, and has been for quite awhile. He’s been in intense pain, and the doctors aren’t exactly sure how to treat it. He’s also suffering due to too much carbon dioxide in his system. In fact, he’s doing so poorly, they have had to put him in a medically induced coma. Erin’s post the other day about having to walk out of the room when her child’s eyes were pleading with her to save him from the doctors trying to put him out was gut-wrenching.

And I’ll be honest that I’ve been tempted sometimes to scroll on by and save myself the pain of watching what this boy and his family are going through. But I don’t. Because I’ve been in that helpless situation with a baby in the hospital, whose life hangs in the balance. As you sit in the waiting room knowing you are powerless to help your child, and not having a clue if he will survive the night or not.

And when you read this, think about this, experience this, you realize the divide in our community is quite petty. We need to be there to support each other every damn day. We need to read and hear each other’s stories, and not scroll away from the pain. We need to reach out to each other when we are in our darkest moments to lift each other up. Because watching your child suffer is horrible. Watching him suffer and feeling alone on this Earth is even worse.

I’m going to make and send Erin a card for Mother’s Day, because let’s face it – we all have more than one mom on this planet who have taught us deep lessons about living. If you would like to support Erin and Kreed, visit their page, like it, follow it, send them something, help with their medical bills – whatever you would like to do. But at the very least, send good, supportive positive thoughts their way. They need them.

Kreed’s address: 2208 Valley View Drive Woodland Park, CO 80863

 

Update: Kreed is back up and on his feet this week, spending time in the hospital playground and at the piano! So happy to see this!

New Home Soon

Posted on by

0

The Man is making great progress with our new house. The plumbing and electric are in, and so is the septic system. We are awaiting inspections today to proceed with insulation, heating and cooling, and drywall. The roof is complete, and the siding is half done, thanks to The Man himself.

The Boy and I visit every weekend and some weeknights. He walks down the cul-de-sac that is one street over, and recently we brought his bike over to the new house so he can ride it there, as well (as he really has no space to ride it at our current house). We have met and befriended our closest neighbors, both of which have dogs, and The Boy loves to visit them. When we visited the site this past weekend, I couldn’t get him to leave.

We’ve also begun talking about his room and what he would like that to look like (blue walls with white puffy clouds, thankyouverymuch). We have begun stopping at a nearby convenience store run and owned by some great people who appreciate The Boy and his quirks. It even has a retro arcade so he can play his favorite games for a quarter.

The time it has taken to build this house ourselves has given The Boy ample time to adjust to the idea of living there, and become accustomed to the surroundings. He is now excited about the move, and this process has been ideal for allowing him time and experience to accept the change.

We can’t wait.

IMG_5006

 

Spring Break is Here. Woo Hoo.

Posted on by

0

Everyone loves vacation, right? Everyone loves a week off of school!

Nope.

The Boy in recent years has looked more forward to it, I’ll admit. But the reality is that the slightest changes in routine throw us all off, and Spring Break is a million tiny changes in our routine and a lot of big ones. Normally, I wake up at 6am to do yoga. Apparently the act of walking down the hall at that time of the morning, gives The Boy some sort of pre-wake up call that I wasn’t aware of. Because apparently, when he is on Spring Break, and does not need to leave the house as early, I am still required to wake up at 6am. Grrr.

And someone (I shall not name names) ate two packages of pop tarts (!), at some point this weekend (we usually get breakfast elsewhere), which leaves one to last us until Wednesday. That same someone complained to Grammy that he had not been given breakfast…

That same someone also required umpteen reminders yesterday to get out of bed and get ready to leave. He waited until the last minute, couldn’t find his headphones, and got upset… sigh… (later found under the bed at Grammy’s, just like everything else that gets lost).

He also thinks he can stay up all hours of the night watching movies in his room.

I’m going to wake him up in 14 minutes. That will be 15 minutes earlier than yesterday. We shall see if allowing him more time to procrastinate helps the situation. But I’m pretty sure the only thing that will help this situation is sending him back to school…

Spring Break in an Autism Household looks NOTHING like this...

 

Making New Friends

Posted on by

8

pexels-photo(1)I wrote recently about how we need to diversify, The Boy and me, and we need to find some new friends. My mom sent me a link to an article on adult friendship recently, which is long, but has a few good insights, even if I didn’t see eye to eye with the author on every point. And the very real truth here is that it’s difficult for kiddos on the spectrum to make friends, and it’s difficult for their parents, too.

In the article, they say that sociologists consider three “ingredients” necessary to form close friendships: “proximity; repeated, unplanned interactions; and a setting that encourages people to let their guard down and confide in each other.” And as adults, we just don’t have those ingredients readily available, at least not as much as we do  as when we are in school. In fact, I can’t even think of a setting like the one described above, except for some of the autism society events, like Friends and Fun, where kiddos and siblings come together on one Saturday a month to celebrate anyone who has a birthday that month. Who attends is really a crapshoot each month, as anyone with a kiddo on the spectrum can understand – some days whatever you had planned just ain’t happenin’. But we are able to talk about things we’re going through that neurotypical families just don’t understand, and it’s absolutely OK for your kiddo to stim and script to his heart’s content because everyone there gets it.

The article also mentions that we don’t make the time to maintain and cultivate the types of friendships that are healthy and enjoyable, and that in general, we need to do more of that. So maybe The Boy and I should just plan on going to Friends and Fun every month and make it part of our routine. I’d say it very well could be our best shot at diversifying, and getting some more eggs in some more baskets.

Not Creepy, Just Different

Posted on by

1

If you watch Jeopardy!, you’ll know that the current champion has won about a week’s worth of games handily.  Matt Jackson has blown his competition out of the water, and unlike other winners of his ilk, is actually likeable.  The Man hates it when someone wins so much the other people don’t even have a chance, but this guy… he really kind of likes him.

It’s not because Mr. Jackson is very sociable or says clever things or is funny.  In fact, he’s not.  I have a sneaking suspicion he may be on the spectrum.  When it’s time to smile, he smiles, albeit a bit forced like every school picture that has come home with The Boy.  When he’s in the game, he’s impatient for Alex Trebek to read the next clue.  When he’s wrong, he blinks and looks like you just shot his puppy.

And after the show, when the contestants stand on the stage in a semicircle and talk to Alex, he stands furthest away and says little.

Who knows if the guy is on the spectrum or not.  I certainly don’t know him as a person.  He may just be a bit socially awkward, as many Jeopardy! contestants have been.  But I’ve been rooting for him because I find him charming.  Not ever having been too socially adept myself, I always root for #teamquirky, because those are the people in this life who will not bullshit you.

So when I read a friend’s FaceBook post where he said he liked Mr. Jackson, found him creepy because he doesn’t blink, but liked him, and saw others responding with comments like “he has a very creepy smile. Something just seems off,” and more comments talking about how he will likely murder Alex Trebek in his sleep, my heart hurt a little.

You assume someone is psychotic because they are not socially adept? People who are different from you make you think something is “off”?

Maybe I would be saying those things, too, if my son weren’t on the spectrum.  But I doubt it. Because I was that kid who only thought of the right thing to say after someone walked away.  I was that kid who hid my teeth when I smiled (and probably looked a bit creepy).  I was that kid who wore a big yellow fuzzy coat to school and got mocked for it (even though it was so cool).

I get so tired of the meanness, the pettiness, the judgy. They say it comes from insecurity. They say it comes from ignorance. I think it comes from laziness, bad habits, mediocrity, and the fact that people just don’t grow up anymore.

I said and did stupid things when I was a kid. I was a kid. Then I grew up.

There’s a whole lot of different people on this planet.  You can either be open to that difference, or you can be closed to it.  Guess which one is more fun?

An Open Letter to Kids’ Cable Channels (I’m Looking at You, Nick)

Posted on by

0

Recently, you changed the schedule. Spongebob had been coming on all summer at 7am.  And then all of a sudden, it wasn’t.

Can I just ask one thing?

Why is it that you give adults all kinds of warnings when you are going to move an adult show to a new night or time, but you give absolutely no warning to the kids?

TVMaybe your test-markets are saying to try something new.  Maybe you think kids actually want to watch some cheesy disney-esque sitcom at seven in the morning.

All I ask is that you give us a heads up.

When you don’t, we spend a week dreading mornings.  The Boy refuses to go to camp or school, or quickly packs up his stuff and takes it out to the truck, insisting that he and The Man leave an hour early because Nick changed the schedule, and Spongebob isn’t even on anymore.  Ever.

(And could I even hope to try to find it on On Demand? Nope.  Then after a week, it suddenly appeared on On Demand, but 2 of the 5 episodes were in Spanish… So helpful, Time Warner Cable.)

Miraculously, Spongebob came on again at 7am after about two weeks. And then… just as fast, it wasn’t anymore.

All I know is that if NBC did this with Grimm on Fridays in season, or if AMC had done this with Mad Men, they would have a riot at their doorsteps.  Why is it fair to do it to kids?  Especially kiddos on the spectrum who depend on their schedules to help them make sense of this world.  When you change things on them, when they can’t count on Spongebob to be on at 7am like always, this world can be a scary place.

All those child psychologists on your payroll, and not a single one of them could figure this out? You’ll have a much more lasting impact on your audience if you actually treat them like real people.