What’s Been Going On

Hello, Friends!

This is high season at work, so working a few hours extra is not unheard of, and there’s a lot going on at home, too.  I just wanted to write a quick little post to say “hey!” and to give you an update.  It seems everything happens all at once, and unfortunately, it’s not the right time to write about these things in detail, but…

  • We don’t want to jinx it, so The Man doesn’t want me to write about it yet, but things are looking good in the selling-of-our-house arena
  • This ugly situation has reared it’s head again, and this time, we are speaking to a lawyer…
  • Camp will work out after all, for The Boy, but he’ll have to wait until the end of this month, which happens to coincide with the only week his dad wanted him this summer.  If you follow the page on facebook, you may remember that the ex’s dad has been diagnosed with stage 5 Alzheimer’s and he asked for The Boy the same week camp started, as well as a family reunion we are attending out of state, so I told him we could do another week in July, and have yet to hear back from him.
  • Some friends and I are looking into Rising Tide Car Wash in Florida to see if we can replicate something like that in our area for our kiddos.  We are excited!
  • I answered one of our phone lines at work and connected with a local mom who just moved here. “My son is on the autism spectrum…,” she said, and so the conversation began.  I love it when that happens!
  • Did you know it’s almost the 4th of July? Where did the summer go??

Thanks, friends, for listening and sticking around.  It’s been a tough summer so far, but how do we manage?

Simple. We Just Do.

;)

Desperation

A friend sent me a tragic news story about a father of a young man with autism, who had been caring for him alone, and had health problems of his own who had ended up taking the young man’s life before taking his own.

Sadly, this is not uncommon.

Murder and suicide are never the right path, but in order to prevent this type of thing from happening, and in order to make it extremely uncommon, you have to look at why it happened. And you have to look at it compassionately.  To condemn someone who is so desperate that they will end the life of someone they love dearly, as well as their own is too easy.  “There but for the grace of God, go I.”  The human mind is a mystery, and the only part of the human body that still has a stigma attached to its treatment.

This is not new.  Anyone who has read Thomas Hardy’s book Jude the Obscure, for example (or really any of Hardy’s books), knows that people have been making desperate choices when no other options are afforded for centuries. The problem we have to address is the lack of support and resources.

The 1 in 68 are rapidly becoming young adults aging out of a public school system that exits them with virtually nowhere to go.  Any programs or services available are largely hit or miss, or are so abominable, no one would place their child there for a minute.  If you’ve ever scanned the want-ads, you will often find job listings for personal care providers paying minimum wage.  What type of people do you think are attracted to a part-time minimum wage job?  Desperate people. And then we’re back to where we started.

We need a robust plan for our autism community that includes meaningful employment for all on the spectrum, adequate housing opportunities, and comprehensive assistance for families and caregivers who often suffer right along with their children due to lack of sleep, anxiety, and post-traumatic type symptoms. What we have now is not enough, and we cannot expect families and caregivers to endure without tragedies continuing to occur.

How many times will we read the same headlines before we do something?

Being “On Call”

I’ve seen reports from studies that indicate that those of us who parent a child on the spectrum often suffer from similar symptoms as those with Post Traumatic Stress Disorder, and does anyone really wonder why?  We are in a constant state of alert, listening and watching for any signs of anxiety and stress that are in a state of escalation.  As some of my fellow bloggers have written, we know our kiddos littlest sounds and know every bit of that language.

We were at the convenience store the other day, and we stop so often that the woman behind the counter, who really means well and tries to understand, takes it as a personal accomplishment if she can get The Boy to say hello. He happened to begin stimming and galloping toward the door, and she said, “Oh no! What’s wrong!” I calmly explained that that was his “happy noise,” and we finished our purchase and left. I realized that most people wouldn’t know that.  Most people also wouldn’t know that the “errr” that has bit of an edge to it and comes quickly after a question is asked is a sign of irritation and disagreement that could escalate, or that pounding either on the floor or any hard surface often is a precursor to pacing, at the very least, and a meltdown in the worst of times.

Listening, watching, and being “on call” for these little noises and behaviors 24 hours a day, 7 days a week can be exhausting, and why I so appreciate our weekly date night.  For one night, I can stop listening and just relax.

on callIt’s also another reason my current job just isn’t working for me.  Even though I don’t get paid much, I am expected to answer texts, emails and phone calls even when I am not at work.  Do I have to?  No, but the expectation is there (and believe me, I’d be in the dog house at work for quite awhile if I just ignored it), which means I can’t even have a weekend where I’m not jumping at every notification from my phone.

A big reason I left teaching was because it took too much from me, and I didn’t have enough left for The Boy when I got home. Now, it seems I have jumped right from the frying pan into the fire. I’d love to only have The Boy to be concerned with, and not other people’s ridiculous concerns about lunchmeat and plastic leis.  The Boys crises I have come to expect, know, and understand.  Anyone else’s seem assinine in comparison, and it’s that that is getting old.

Proud

The Man and The Boy are a sight to behold.

When we end up going somewhere in two vehicles (which happens more than I’d like, but what can I do), The Boy will always choose to ride with The Man in his truck.  They talk about vehicles, and The Man makes the stupidest, corniest jokes that only 13 year-old-boys might find funny, and they crack each other up.

They don’t wrestle as much as they used to, because The Boy is quite simply too tall, and they could injure each other easily. But they are quite comfortable with each other, and it makes me smile.

The Man has learned a lot, especially in the last two years. He questioned much more at first, but now he seems to get it. He still gets annoyed, as I do, after listening to forty-five minutes of descriptions of the dome light of every known make and model of car. But he doesn’t lose his patience. He seems much more ready to understand that a meltdown is not misbehavior.

My BoysAs I write this, I am looking out our back doors, watching The Man teaching The Boy how to drive the lawn mower, while sitting up on the back of the seat because The Boy can no longer fit on his lap.

And earlier, I watched him tear up at a news story about a special needs family fighting to get treatment for their daughter. I know his perspective has changed, and I know now we are an “us”.

I am so happy for The Boy, so happy for us. And so proud of The Man.

Summer Break Doesn’t Mean Vacation at Dad’s

Friday, The Boy came home telling everyone he was going to miss school Monday because he was going to visit his dad.  There were shared looks all around, between us adults in The Boy’s life, because we wondered where this was coming from, and how best to let him know that this was not happening.

I took the lead and explained that no, he was going to his last half-day of school on Monday, and then Grammy was taking him to lunch.  If he wanted to call his dad to discuss a summer trip up to his place, he could do so, but as of right now we have no plans.

This took a few repetitions from all of us.  Then he decided that Grammy would take him to Myrtle Beach on Tuesday… Wha?? Again, we explained that a trip like that takes some planning and no little amount of money.

“How much?” he asked.

“At least $200,” The Man replied.

“I’ll have to find a way to make some money…” The Boy said.

He wants to be on the road again...

He wants to be on the road again…

We’re still not sure if it was conversations with other kids at school who were either going on vacation, or visiting their own dads in other places, or something else entirely that triggered this fantasy-plan.  It may just have been the strong association he has that summer break equals a trip to dad’s, even though it didn’t happen at all last year.

He’s reluctant to call him, at any rate.  And I doubt any plan would come to fruition, anyway.  The ex has been more and more absentee the past few years, and I don’t see that trend changing as The Boy gets older, and possibly harder to relate to. I suspect the ex is dealing with his own unemployment and demons right now, anyway, if the absence of child support means anything.

Monday came, and a meltdown ensued at school, which necessitated a pickup by Grammy, and a very rocky afternoon when the Boy realized he was done for the year and couldn’t go back. Eventually, an ice cream sandwich and a trip to McDonald’s for lunch helped him turn the corner.  Was it the bus being late to pick him up that morning? Was it the fact that many of his friends were not there that day? Or was it the fact that his plans were not turning out like he’d hoped, and he finally understood that he was not going to his dad’s? I’ll never know.

Usually these fantasies indicate something he really wants to do, but this one is just not in my power. Hopefully, we’ll be able to talk him through and out of this idea into what our real summer plans include. I hope it’s enough for him.

What’s in Store for Next Year

Well, I guess I didn’t need all that battle gear for our IEP.  Apparently I had made my wishes clear in the email I had sent to The Boy’s teacher specifying that I did want him to have access to his general ed peers, you know, as in, least restrictive environment?? But there are changes coming for next year.

The progrIEP documentationam teacher will now only be at The Boy’s school part time because they will be spreading her autism knowledge throughout the county, now. In other words, they are no longer funding the pilot program, and don’t want The Boy’s middle school to become a magnet school for kids on the higher functioning end of the spectrum, so they are spreading her too thin to try to knock some sense into the teachers at other schools who act as if they’ve never seen a kid with autism before.  My God be with her, because that will be a Sisyphean task.

In the meantime, The Boy’s day will not look too much different except that his social skills class will be a pull-out from his electives, and combined with the pull-out for speech, he could potentially be pulled out of his elective classes four days out of five for a half hour.  That’s a recipe for some negative behavior, if you ask me, but they didn’t, so The Boy (and they) will have to deal with it.

I mentioned that we will be  building a house in-district, to which they responded very happily, and made it clear that if we were not residing in said house by the time 9th grade rolled around, The Boy would be placed in his current home high school.  NOT GOING TO HAPPEN.  Even if we are not in said house by then.  But I will fight that battle if and when I need to.

I’m crossing my fingers for these plans not to change too much between now and August. I’m pleased I didn’t have to fight, and encouraged by the team in place. Now to get the house built…

Conversation Starters, Spectrum Style

Our kiddos on the autism spectrum need practice with social skills.  I tend to let The Boy relax when he gets home because I know he’s worked hard all day, staying quiet when all he wants to do is make silly tuba noises, paying attention when all he wants to do is draw, and doing his best to get his work done all damn day.

But, neither does he get a free pass.  We still have homework to complete and projects to do at home. And summer is not a free pass in this house, either.  Especially if there is no camp.

I have always taken summer as a wonderful opportunity to target areas in my own learning, or develop new ways of doing because we run out of time during the school year.  This is so ingrained in me, that I’ve been planning with The Boy for all of the areas we can practice skills because we just don’t have time, and The Boy does not have the energy or patience after a long day of school.  I was reading a blog post on Momastery.com I found through Pinterest that looked like an activity that had potential not only for social skills and conversation practice, but could also provide an opportunity for me to get inside The Boy’s head a bit. The Holy Grail for autism parents.  But as I read, I realized it wouldn’t quite work for us, because open-ended questions often do not get answers from The Boy.  There are just too many possible answers, and he freezes.  He needs selections to choose from –  multiple choice, if you will. And then I remembered this other game of question and answer, a get-to-know-you game where possible answers are provided…

We’re pretty used to modifying activities and assignments around here, so I’m sharing with you an activity (free printable) I developed, “Planting the Seed – Conversation Starters for Kiddos on the Spectrum“.  Check it out, download it, tailor it to your own kiddo and then come back and let us know what you thought and how it worked.

dandelions_black

Escalating the Situation at 30,000 Feet

aircraft-airplane-flying-2105If autism is on your radar, you are now aware of the recent forced deplaning of a family of a girl with autism by a United Airlines flight crew.

From the reports I have heard, including the mother’s own statements, it didn’t need to go down like that.  The way it was handled increased the stigma of those on the spectrum, and created fear where there wasn’t any previously.

I think Mom, already in high-anxiety-panic mode, and trying to avert a meltdown tried to get some help, and used a poorly phrased warning to encourage the unhelpful and apparently untrained flight staff to be proactive. Unfortunately, it may have sounded like a threat, and anyone who flies with any regularity knows that any possible threats are “handled” immediately, with questions only asked after the fact.

And let’s not even go there about her being unprepared. Autism moms are not machines, and there are times when we are caught unawares by our kiddos. It seems that she did the best she could with what she had at hand. And asked for some warmed up rice.

I think the flight staff who is trained in how to de-escalate situations utterly failed in this instance. Maybe Mom came off as “that” mom, the demanding one, and they responded with what many of us in the service industry do when customers start to get snippy and demanding. We slip into, “I’m sorry. That’s our policy,” because we can, and we take a secret glee in being unable to help someone who is so clearly trying to abuse the system.  But they failed to recognize that this was not an unhappy and demanding customer, this was a mom making a plea for the sake of her daughter and the comfort of the other passengers.  They failed to listen when she said her daughter was autistic.  They failed to do their jobs and do what they could to diffuse the situation.

They brought her the rice and probably immediately went to the captain, reporting a threatening passenger because they could, and because that would teach her to be demanding and make threats on a plane.

And the captain, trusting his staff, made the call.

But even he failed to do his job and investigate any further before making that call.

The flight staff failed all of their customers. They failed to listen, they failed to be compassionate human beings, they failed to diffuse the situation.  But more than that, they violated this young person’s rights.

So my personal take is that yes, this flight crew needs training about passengers with special needs, as well as training in disability rights.  (Many flight crews do – I can tell you stories about the many, many flights I’ve taken with The Boy by myself.)  But they also need to go back to square one and be retrained about their primary job in that airplane – de-escalating any potential situation.

The Times, They Are A-changin’

A few weeks ago, I wrote about how the pilot program that we fought to get The Boy into will not be extended into the high school.  And tomorrow, I meet with the IEP team to discuss the plans for next year, after hearing through the grapevine that the pilot program in the middle school is being stripped down, as well.  Hence, the fabulous “opportunity” to place The Boy into a resource room for all of his cores! Blech.  Do they really think I’m that dumb?  But I digress…

Our fear is that without the pilot program extending into the high school, the district will most likely re-assign The Boy back to his home school… Do you remember his home school? I do. It wasn’t a good experience. And if that middle school that he attended for one quarter was any indication, I doubt the high school he would attend would be remotely better.

The Man and I have been in deep discussion and thought ever since these changes became apparent.  We’ve been considering options for the future of our little family.  And we’ve been property-shopping.

Even before this all came about, The Man and I were keeping our eyes peeled for an affordable bit of property on which he could build us a house.  Not hire a builder to build us a house.  This would be The Man, building us a house, with the help of some of his friends in the trades.  You see, this has been a dream of his for awhile.

So when our hand was forced, and the school district seemed likely to change The Boy’s placement for the worse, The Man and I decided that now was the time to go all in, buy a plot of land, and start building on that end of the district so that, at the very least, The Boy could attend high school with people he knows.

We closed on our lot today.

New Beginnings

More change is coming our way, as building a new house means selling our current house, and living somewhere else temporarily until the new house is built.  A lot for a kiddo on the spectrum.  But I’ve already started prepping him.  And he is actually looking forward to being able to sleep in later and a much shorter bus ride. :)

Stop & Listen

A common theme here on Simple. I Just Do. is that I forget, sometimes.  Your kid gets to be 13 and you feel like you know everything until you don’t.  His behavior is wonky, he’s depressed and ready to blow for a week, and you scratch your head and say, “I hope he gets over this thing soon, because I have no idea what’s going on with him!”

And sometimes you lose it.  You lose your patience because you are just so tired of hearing the negative, and the same thing every day, the fixations on things that never happened, and the punishments he has dreamed up for himself for poor choices he didn’t make.  And you snap, because you just don’t have any more answers, you just can’t understand, and you just can’t listen to one more minute of the perseverations.

And you start talking to him like you would talk to a neurotypical kid who is lying, or has made a poor choice, or is misbehaving, all the while knowing that he is not that kid, and this is not any of those situations.  But you do it anyway because you’ve got nothing else.

“No, that’s not true.  No, that didn’t happen.  I need to understand the real reason why you are upset.”

And you may even raise your voice a little, because he just doesn’t understand you.  And you just don’t understand him. And there is complete communication breakdown. And he begins to get teary eyed.

And then he tells you something new.

He tells you he is upset because his plug and plays are not working right, and you remember that you were going to get the crud out of the battery compartment of that one plug and play, like, two weeks ago and you never did.

plug and playAnd so you hug him, and tell him to find his little screw driver so you can take the covers off of all of them.  When he brings you the screwdriver, you tell him to get the pack of batteries you bought him last weekend, and you sit down together.  And you start working on solving this problem.  This problem that he told you about two weeks ago.  This problem that you said you would help him with and you didn’t.

This problem that a neurotypical kid would have nagged you about, but that your actual autistic kid did not nag you about.

This problem that seemed small to you, but was probably huge to this boy who couldn’t communicate its importance to you.

You kick yourself because you knew and didn’t know at the same time.  You forgot that the importance of things is relative.  And he told you, but you weren’t listening.

 

Luckily, all he cares about is that what’s been bugging him is being fixed. He is no longer negative and depressed, but excited and chatty.  Communication breakthrough. Peace restored.  And he doesn’t hold it against you like a neurotypical kid might.  And that makes all the difference in the world.