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.

Moving, Removing, and Limbo

We put our house on the market in June.  Two days later we had an offer.  We negotiated and agreed upon a price.

Since that time, we have been going through the process – appraisals, inspections, etc.  All of the details that have to happen, be approved, and then to the next step.  This past week, we were supposed to close on Friday.

Monday we got a call that there was an issue with the paperwork, which could nullify the deal. Tuesday, we got another call that the issue had been cleared up, and we were all set to go with the closing on Friday.  Wednesday afternoon, we got another call with another issue, which could delay the closing, but were told to plan as if the closing was still going to happen.

I don’t know about where you live, but apparently here, the buyers take possession of the house immediately after closing.  This means if there is a closing, your house better be packed up and empty.

As a result, we packed up our entire house Wednesday evening so that The Man could move it all to the place we were supposedly renting on Thursday to be ready for the closing Friday.

Thursday, we were in limbo, but emptied the house.

Friday, we were notified that the closing would be postponed 2-4 weeks.

How do people do this? All of the professionals kept saying, “This happens all the time,” and the response in my head was, “Why? How?” I think my stomach was in perpetual knots the entire week.  I couldn’t concentrate at work.  The Boy was completely confused, staying at Grammy’s several days and nights so that he at least had some consistency in his life.  As it is, he is still confused, as am I.

limbo roomWe decided to move everything back to our house, and forgo any rental until the papers are signed, and the money has cleared.  It’s just too much to bear.  In my opinion, attorneys handling the closing should get their paperwork in order way before the week of the closing, so that if there are any issues, people are not having to rent another moving truck to re-move back into their own homes, hopefully they haven’t yet signed a lease on a rental, and they are able to cancel cable installations after they’ve already happened.  It’s insanity.

Apparently, everything is still going to happen, but we have some steps to follow to clear up an issue.  So keep us in your thoughts. The real estate rollercoaster is always aggravating, but this has been beyond the pale, especially with a young man with autism in the house struggling to understand what’s going on.

My Aunt

About a week ago, my aunt was killed in a car accident on her way to our family reunion.

She was my dad’s only sister, and my only aunt not by marriage.  She was my godmother, and mother to 10 children, including three sets of twins, and a son with Down’s Syndrome.  She was a teacher, and when she retired, she continued to teach GED classes at the local prison.  She came from a long line of strong, active, intelligent, family-oriented women.  I’ve written before about her and these strong women here and here.

We were so looking forward to seeing her, and listening to her and my great-aunt share memories.  It was a hard weekend, but it was amazing to be able to share our grief with extended family members.  We won’t be able to make it to her memorial service, but she has been on our minds and in our hearts all week.

Even though she was 87, she was taken from us too soon.  She was an inspiration, even though she’d probably roll her eyes at that.  She was another one who, when asked, “How do you do it?” would have simply replied, “I just do.”

I love you, and I’ll miss you, my dear Aunt Mickey.

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.

Take the Time

numbers-time-watch-whiteThe other day, I answered a phone line that I don’t typically answer because my co-worker got called away from her desk a few moments before.

The woman on the other end began to ask about the size of the boats we use and ended by explaining, “My son loves the water, you see, but he’s terrified of boats.  He’s on the autism spectrum.”

For a split second, I had a choice.  I could identify myself as someone who could sympathize on a very real level, or I could answer her question simply, and get off the phone quickly to answer another call.

“I totally understand,” I said.  “My son is on the spectrum, too.”

Come to find out, she had recently moved to the area with her family, and was looking to connect with other families, specifically with the aim of working to expand services for our kiddos in our area, because they really are dismal.  We chatted for a good ten or twelve minutes, and exchanged phone numbers.

Since then, we’ve friended each other on Facebook and connected again via text. I hope to meet her and her family soon, and introduce them to some of my friends and their families so she can start making some connections in the area.

I know that sometimes we get tired of carrying this mantel of “autism mom,” and sometimes we just don’t want to see another news article about a possible cause.  But I’m glad I made the choice to identify my true self.  Two years ago, I was where she is now, freshly moved to a new state and trying to find a new community of support and advocacy.  If we don’t take the time for each other, who else will?

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.

;)