I Must Have Jinxed It

Everyone knows that when things are going well, you jinx it by actually stating how well things are going, right? Remember when I posted about how hopeful I was for 8th grade?

Now I’m nervous.

Went to back to school night last week and found out the teacher I left work to meet with the previous week, who would kind of replace his ASD teacher who was leaving the school would in fact NOT be teaching him anything.  He also didn’t have art on his schedule, and no one knew who his homeroom teacher would be.

You think kids with autism have a hard time with change, we autism moms have a hard time, too.

Yuck.

Monday, The Boy started the school year, and for the first time since he started school in kindergarten, I felt like I didn’t have a teacher to contact who would know what was going on with him.  No one who really had a good idea of the whole package – his IEP requirements, what classes he should have, triggers, calming techniques, how his overall day went… everything.  He seems to have a couple of teachers who have a partial picture, and that doesn’t sit well with me.

When he came home, I asked him if he had art, which was supposed to have been added back to his schedule.  He said no. And now I’m asking myself, “Is the second day of school too soon to go into That Mom mode?”

There’s so much going on right now, I’ll probably just wait and see before I panic. I sure hope I’m wrong.

He’s Like a Hemorrhoid that Just Won’t Go Away

The nightmare continues.

The mobile home park owner has retained an attorney to write me a nasty letter saying the ADA didn’t apply to him or his road (which it does), and that I probably lied about contacting an attorney (and tried to catch me in the “lie” by cc’ing her on the letter), and that my son’s use of the park is a nuisance, which will be remedied by legal action if it doesn’t stop.  Of course, they still insist he is running in front of cars and lying down in the road.  Funny thing is the Chief Deputy Sheriff observed him walking in the park last week, observed him getting off the road when a truck passed by, and went and told the owner face to face that The Boy has every right to walk in that park…

Law enforcement didn’t bow down to him and do what he wanted (in fact, did quite the opposite), so he figures he can buy the last word by retaining an attorney.

But the law isn’t on his side. Now we just have to figure out how far we want to take this…

I have a headache.

Oh, and Happy First Day of School!

The Bigot Just Doesn’t Know When to Quit

If you have followed this saga, you can probably gather from the title of this post that the poor excuse for a human being has upped the ante.

Last week, he called the sheriff’s department with a complaint, purportedly out of concern for The Boy’s safety.

Applies to AllThe Lieutenant knocked on my parent’s door, asking them about The Boy and his activities while he stays with them.  Grammy gave him the whole background. She said he was polite enough, and after he left, she called me to let me know he may call me.  He never called. Not knowing if this visit was legit or not, The Man and I decided to head to the sheriff’s department the next day to request a report from the previous night.  If no report existed, it was not a legit visit, and we were up against a good ol’ boy network.  If it did, we could see who made the complaint, and go from there.

Sure enough, there was a report. And sure enough, the poor excuse for a human being was the one who complained, stating that The Boy “runs around the park constantly” and “refuses to get out of the way of cars,” both utter lies. After reading the report, we requested an appointment with the Sheriff himself, and acquaintance of The Man. He was unavailable, but we were able to see the Chief Deputy, second in command, right away.

I had come prepared (what special needs mom wouldn’t), and had copies of both the letter he had given my mom, and the one I had sent in response (“Well-written letter!” the Chief Deputy commented). I gave him the whole story, he jotted notes as we went along, but I didn’t have to get very far to notice I had won him over.  Just about to the point when the pathetic excuse for a human being told The Man to that we needed to keep our retarded kid inside… yeah, that was about the point he chose sides, and got a steely look in his eyes. He reiterated several times that The Boy has a right to walk wherever he wants. And even if he was constantly running around the park, he has a right to do that, too. He said the next step would be to get a restraining order against the pathetic excuse for a human being, and that sometimes that ended things, but other times that just escalated the situation. He recommended speaking to our lawyer to see what she recommended. We discussed setting up a chance for The Boy to meet a deputy in uniform o that he would feel comfortable, to which he was extremely accommodating (“Anytime you want to set something up like that, just give me ac all and we will make it happen,”), and we inquired about the training his deputies have in autism, to which he said they were all trained in CIT (Critical Intervention Training) which encompassed dealing with those on the autism spectrum, as well as other disorders that might prevent someone from responding to them in an expected fashion.

We walked away heartened and relieved. We are moving forward with a plan for The Boy to meet with a deputy at the mobile home park. I also plan to get in touch with an attorney, even if it sets us back a little.

 

Apparently, this guy doesn’t often have people stand up to him and his bigotry. Unfortunately for him, he has chosen my boy to bully. We’re going to drag this pathetic excuse for a human being into the 21st century, kicking and screaming if we have to.

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

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.

It Could Have Been Really Bad

This morning, the cat escaped as The Man and The Boy left to go to Grammy’s.

He’s escaped before, but usually sticks close to the back deck, or just circles the house, allowing us to follow him.  Today, however, there was a rabbit involved, and the hunter in Raffi burst loose.  When the man went to retrieve him from the back ditch (between our lot and an overgrown field behind our house), Raffi actually hissed at him and bared his teeth.

Rather than risking a hand to the monster, The Man decided to drop The Boy off, and return to see if he could get him back inside.  But when he returned, Raffi was nowhere in sight.

He called me at work, and all the possible outcomes ran through my head, and remained in the back of my mind all day.  When I ran home after work to change, I looked all over the property, making smoochy noises, purring, and chirping as I went.  Nothing.

I started to think he was gone for good.

And I started to wonder what I was going to say to The Boy when he asked if Raffi had come back.

I prepared him as best I could, explaining that he may come back tonight, or sometime in the next few days, but that if he didn’t come back in about a week, he may be gone for good.  He processed this, and seemed ok, but when we got home and Raffi was still not around, he began a negative cycle, which was not going to end well.  How do you tell a kid to be patient when he is worried he’ll never see his cat again?

After about an hour of the pacing, the self-talk that started to get louder, including phrases like, “He’s NOT coming back,” I heard The Man’s truck pull in.

And then I heard a small kerfuffle, and The Man saying, “Open the door!” to The Boy, who was outside pacing the deck.

And Raffi was back.

Tired Boy

Raffi was visibly tired after carousing the neighborhood, or ditches, or the neighboring golf course… who knows where he went (we are contemplating a go pro for his head in case he pulls this stunt again, because we are that curious).  The rest of us were incredibly relieved, and impressed he could find his way home. And The Boy was happy not to have been abandoned after all.

A Bigot and a Bully

slowLast year, the landlord and owner of the mobile home park where my parents live approached The Man and told him that we needed to “keep (our) retarded kid inside.”  He used the r-word several times in reference to The Boy, even after The Man asked him not to use the word.  He then went on to make wild accusations about The Man, and at the time, I was very proud of my husband for not hauling off and beating the pathetic excuse for a man, because I’m not sure I wouldn’t have gone ape$#!! on him.

Fast forward a year, almost to the day, and this pathetic excuse for a man writes a letter, knocks on my parents’ door and hands it to my mother, saying, “Read this.” He then took a few steps off the porch and said, “I’m sorry but that’s just how I feel,” and walked away.

The letter explained that he had several complaints about The Boy playing in the park roadway, jumping out in front of cars, and lying down on the roadway, as well as using his scooter in the roadway.  He requested that The Boy be supervised at all times while outside.

Let me start by saying that the “speed limit” in the park is 5 miles per hour, with a sign saying “Slow, Children Playing” above every speed limit sign posted in the park, and that new signs were erected within the last two months.  Let me also add that there is no sidewalk in the park, nor is there a “recreation area.”  In addition, other residents and guests of all ages ride their bikes and walk their dogs in the roadway.

My son is thirteen years old, and knows to get out of the way of an oncoming car, even if it is only going 5 miles per hour.  He does not jump out in front of cars, nor does he lie down in the road. But my son is “different” than all the other residents and guests. And that is the basis for this discrimination and harassment.  That is the basis for how this pathetic excuse for a man “feels,” and not any fabricated “complaints.” You kind of give away your “tell” when you call a kid “retarded.”

I have spoken with an attorney, drafted and sent a letter, and copied it to the sheriff’s department as well as the state Attorney General.  This pathetic excuse for a man has not only violated the Americans with Disabilities Act, but also a state act that was passed to protect the rights of those with disabilities. We also plan to make an appointment with the sheriff’s department to take The Boy there and meet with some deputies, alert them to the situation, and educate them a bit about The Boy and his autism, just in case.

There really are people out there like this pathetic excuse for a man, folks.  They exist and they think they have the right to say and do what they’d like, as well as dictate what those who are different can and can’t do.  They are so wrong, and this good ol’ boy, pathetic excuse for a man is gonna learn how wrong he is.

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.