Traveling with The Boy

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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…

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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

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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.

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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

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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

 

Scheduled Time

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I lost one of my two flute students to gymnastics this week.

When I was a middle school band director, I lost more than a few to hockey and dance.

But when I was a kid, this wasn’t a thing. Sure, kids were in soccer and I even took ballet in kindergarten. But this every-night-of-the-week-for-four-hours-a-night-oh-and-four-hours-on-Saturday-too was definitely not a thing. Neither were the moms who got mad because the rest of the world couldn’t accommodate their insane schedule. “What? You mean I can’t get a dentist appointment at 3am on a Sunday because that is the only time my kids are not in dance/gymnastics/swim/horse back riding/AAU badminton??”

*dragging over large soapbox*

*standing on said soapbox*

When I was a kid, we did this thing called “playing” with the neighborhood kids. We even had a game called “Ghost in the Graveyard” for when we were out past dark – shocking, I know. We rode bikes, climbed trees, ran through each other’s houses like packs of wild animals looking for fruit snacks, and then back out through the other door. I “taught school” to some younger children (for as long as they would stand it) on the hill in a neighbor’s yard across the street. We rode bigwheels back and forth down the street. When we got a little older, we walked across a small field (with garter snakes!) to the convenience store to buy candy.

We were not scheduled within an inch of our lives.

I think today’s parents have control issues. IMHO you should not be involved in any activity which eats up 24 hours of your free time per week at the age of 9. It’s wrong, and there will be long term consequences. Don’t you trust your children to any degree? Do they get any say in how they spend their waking hours?

Autistic kids aren’t usually much for team sports, and for this one small blessing, I am thankful. But even if The Boy were not on the spectrum, I would not be raising my child on scheduled time.

*crawling down off soapbox, albeit ungracefully because I only had the one year of ballet*At the Cape

Kreed

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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!

Another “Doh!” Moment

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I don’t know if any other parents of special needs kids have “Doh!” moments, but I do on a regular basis. I don’t know if I’m just not paying attention, or what, but often something that has been staring at me in the face for awhile finally dawns on me, and I feel particularly dense.

Since The Boy was a toddler, we realized he has some sensory issues. In facet, I was researching and learning about sensory processing disorder before I even thought autism was a possibility. Many kids are hyper-sensitive to sensory stimulation – too much noise, too much touch, too much everything. But The Boy was just the opposite. He loved to be crushed in great big hugs, and steamrolled, and tickled, and be in the water for great lengths of time. He needed more sensory input to regulate himself. As he got older, a few variations were thrown in, like aversion to fire drills and loud noises in general, which would be classified as hypersensitive, while still maintaining hypo-sensitivity to other sensations.

pexels-photoFast forward to The Man entering our lives, and me noticing he doesn’t like to hold hands much. Or too much touching in general. Of course, there are times and places… ahem, but in general, if my legs are on his lap too long, he’ll have to get up and move, or if we do hold hands, it will not last longer than 20 seconds. I’ll admit it’s been a little tough for a touchy-feely girl like me, who was raised on hugging and cuddling, and all of that. It wasn’t until last night when I kissed him on his forehead and he almost flinched that the tumblers fell into place. He is probably affected by SPD, on the hypersensitive end.

He and I both have always suspected he may have ADHD – always on the go, doesn’t like to sit and relax, periods of hyper-focus (doesn’t like to be interrupted), etc. and sensory processing disorder is much more likely to be co-morbid with something else like ADHD or autism then as a stand-alone issue.

I’m not trying to diagnose him, believe me. But it helps me understand his responses without being hurt by them, and changes my perspective a bit, which can only help. And yet again, my experiences in life seem to be acutely tailored to the challenges I face. I’m just glad my brain can work this stuff out, even if it isn’t always too quick on the uptake.

 

New Home Soon

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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.

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Spring Break is Here. Woo Hoo.

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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...

 

This Battle’s Not for Us

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I was thankful for one of The Boy’s former teachers last week. She’s the one they moved to a different school this year, and we’ve missed her sorely.It’s funny to think that when we wanted to move him to his current school, she was not in favor and didn’t think he was right for the program, and she is now one of his biggest advocates.

I voiced all of my concerns over this Occupational Course of Study (OCS) with her – that he wouldn’t be in the least restrictive environment (LRE), he wouldn’t have access to his general ed peers, and he may not be able to take band.

She talked me off the ledge. She made me see some things from a different perspective, and made me realize that if I have to choose, this program could work for The Boy. And that he has every right to be in band, although logistically, he may only be able to be in it for one semester.

And I can live with that, as long as they make the “occupational” part of it something in which The Boy has interest. He won’t be folding towels at the hospital if I can help it.

But that’s not what I’m telling the district. I had contacted the director of special ed, as she had been an ally in getting The Boy his current placement, and had earned my respect. I wanted a meeting, but she said she would call me instead due to expediency. Except that all she wanted to do was sell me the OCS program, and I wasn’t going to let her. I wanted her to explain how it was legal, without placing kids in their LRE. After she figured out I wasn’t going to be sold, she told me she would set up a meeting with the transition coordinator (with whom I already met and wasn’t all that impressed) and the occupational coordinator. She told me she would get back to me the following week. That was last week, and she didn’t.

When I emailed her again yesterday, she said that the transition coordinator had been waiting for my call to answer my questions… What?

I sent an email – you know the one. The one I crafted for an hour, making sure to sprinkle acronym bombs all over the place so she would remember that I wasn’t some ignorant parent who didn’t know anything about student rights or IDEA.

Lo and behold, she was able to set up a meeting after all. For tomorrow. Fancy that!

But, I’ll be honest. This meeting isn’t really for us. I don’t expect them to re-design the entire high school setup for us, because they won’t. I don’t expect them to wave a magic wand and put him in band all year, because they won’t. I don’t expect to hear much but placating platitudes. But I want them to know that I know. And I want them to know that I’m not going away, so that if something isn’t working, I’ll be back. And I want them to know that there is a whole host of kids coming up through their schools, and that if I know that what they’re doing is illegal, they better damn well know that those kids’ parents will know it too. And they better think about just what they are going to do about that.

high school

 

Slow Down

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Yesterday, I had a real-live (paid) day off. It was fantastic. After the boys left I went back to bed for about a half hour, not to sleep, but just because I could. Then I got up and got dressed and headed to Panera to work on my novel revisions. I bought a bagel with cream cheese and a hot tea, and went to work. At about eleven, The Man called because we needed to pick out fixtures for the showers at the new house. After that was done, I came back home to a silent house, cleared off the dining table, and went to work again. It was glorious. I’m sorry there was no post yesterday, but sometimes a woman’s gotta do what a woman’s gotta do.

The reason I had the day off was because CPAs traditionally take the day after the tax deadline off. I didn’t know this until I started working there, but it’s much deserved. The past three weeks or so have been off-the-rails busy, and the CPAs work much harder and even longer hours than I do.

During that especially busy season, I have realized that I attempt to do almost everything fast. Every task is a hurried rush, I type fast, I drive (slower than I used to – it’s the South, but still) fast, and even at home, I eat too fast.  And I believe this started when I was teaching school, where you literally only had an hour to do all of your planning and prep, and only 25 minutes for lunch. Then the awful job at the boat place reinforced that with answering as many calls as you could, doing way too many tasks simultaneously, and not even taking a lunch break.

These rushing behaviors are leftover, but ingrained. I have decided to consciously slow down. Even with the tax deadline looming, I knew everything would get done, and I down-shifted my speed to a more sane level. It will take some work, but  I think it will be worth it in the end, if only for my health and well being.

My new mantra: “Be the sloth…”

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