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.

;)

Who’s Afraid of the Wolf in Sheep’s Clothing?

Recently, I have written a few posts venting about my job. I decided to take that risk because I felt it was important to write about what happens when a person like me who cares for a person like The Boy has a work-life balance that is out of wack.  It is extremely overwhelming, and when work intrudes on home life, it can be incredibly defeating.  You need the job to care for your loved ones, but the job is actually preventing you from giving your best to your loved ones.

Today, my boss revealed to me that someone in our office made him aware of this little blog, and he has read some of it.

Luckily for me, I think it gave him some perspective he didn’t have before in regards to my need for more balance, and it was the jumping off point for a refreshing conversation between the two of us.

But now I’m left to wonder… Who wanted to get at me so bad that they would report what I say here to my employer?

This happened to a close friend of mine who had a crazy person create a big crapstorm about her handling of the finances of a nonprofit, contacting the state level people of the nonprofit (who assured her that the finances were just fine), and then even going so far as to contact my friend’s employer, anonymously of course, to insinuate that they had better check out my friend because she was mishandling money.

When you start messing with people’s livelihoods, you have a problem.

And so now, I am wondering about this little blog of mine.  I’m wondering if I still even feel comfortable enough to write here.  I’m not going to get stuck in the cycle of asking myself whether I should have or shouldn’t have posted.  This blog has never been just for you, or just for me.  It has been for all of us. But now that I know someone is reading who felt like it was necessary to take that step, use what’s written here for their own personal gain (whatever that was), and quite possibly in the end, could have hurt me and my family…

I don’t feel “safe” here right now.  And I have to think about that.

Let me know what you think.

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.

Here We Go Again

Last week, I posted about feeling very overwhelmed, and I thank you for your patience.

Most of the reason for feeling so overwhelmed is that my job just sucks.  It does every summer. It is our peak season, and things get hectic, and my boss does not handle stress well, yet simultaneously craves it. My job duties change daily, and sometimes are diametrically opposed to what I was told to do the day before. Everything is an emergency, his schedule is incredibly erratic, and he gives no one the power to make decisions on their own.  A project that is time-sensitive may sit on your desk for days because you can’t get him to talk to you for five minutes to make a decision, and then when it doesn’t get done, the blame is placed squarely on your shoulders.  And somehow, there is always time for blame.

I got a dressing down this past week about lunchmeat, people.  LUNCHMEAT.

I’m to the point where I cry before I go to work (ok, only when it’s that time of the month… usually), and that is a very real sign that something needs to change.  Meaning I need to find a new job.

Yet, it took me five months to find this one, and I’m not exactly a shlub…

So, I look. I do the job search dance. I count the minutes and hours down during my work day. I take solace during the times when the boss is not in the office. I dream of walking into his office to give him notice, and have even toyed with the idea of simply walking out and not going back. And I hope for something better.

I really hate to wish the summer away, but this is really just too much for too little in return.

When I go, I'm taking my red stapler.  Because it's mine...

When I go, I’m taking my red stapler. Because it’s mine…

Treading Water

Hey, friends. I’m having a hard time keeping my head above water lately. There’s a lot going on.  Our busy season at work is here, and the crap is hitting the fan.  Where I work, that means the blame is flying, and my job satisfaction plummets.  The Boy is just about done with school, which means I need to be gearing up to support him with activities and enrichment for the next five to six weeks until his camp starts.  We listed our house for sale today, which meant a weekend of staining the deck and the porch, and painting window trim (and getting a really stellar sunburn while doing it), and now means keeping the house tidy for showings…

When I get overwhelmed, I start to feel like someone or something is sitting on my chest.  I have to remind myself to breathe. I have to engage in a little self talk, and I have to, HAVE TO carve some time out to plan.  Planning helps me to see the possibilities, see the light at the end of the tunnel, and keep things in perspective.

In the meantime, I wanted to say thanks for reading, thanks for sticking around after a week with no posts, and if you get a chance, please send positive vibes my way.  Congrats to the teachers for making it through another year, and remember to be nice to people in the service sector.  We’re not all idiots.  Now, I’m going to carve out some planning time so I can send some really good posts your way this month – I can’t believe it’s June already!

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…

Not Easier, Just Different

Mom & The BoyThe other day, I pulled out all of the scrapbooks and went through them, remarking at how little The Boy was, and reminiscing. I think some people look through old photos and are wistful for easier times…

I don’t know about other parents with kiddos on the spectrum, but I don’t miss those times. They certainly weren’t easier.

Back then, I had to deal with diapers, until the age of five.  Now I have to deal with the toilet clogging on a regular basis (Thank you, Intestinal Surgery!)

Back then, I had to deal with The Boy wandering and getting lost in department stores.  Now I have to deal with getting him to get some fresh air and come out of his room.

Back then, he was obsessed with Wubbzy and Mat Man.  Now he is obsessed with Sonic the Hedgehog, and the dome lights of cars.

Of course, our history isn’t entirely one of struggle. Luckily, the blessings of that little Boy continue to make him my joy today.  He is still (even at thirteen!) affectionate, at least at home. He still has a wonderful sense of humor, and is a lot of fun to be around. He is still able and willing to participate in the world around him (as soon as he finishes his game).

Nope, I don’t miss those days — OK, maybe I miss the smell of a baby, the giggle of a toddler, and the ability to pick him up and carry him out if he started fussing. But I don’t miss not having a single clue about autism, or a single person to talk to about it. I don’t miss the what-ifs and constant worry that is only lessened with experience and time.

I’m not saying it’s easier now.  It’s just different.  And now, even if I don’t have all the answers, at least I have a clue. ;)