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?

The Ex and Summer Plans

The ex has never abided by our agreement which states that he is supposed to give me his intended plans for summer visitation by May 1.  It has never happened in the seven years we have been divorced. This has never surprised me because he has always been a fly-by-the-seat-of-your-pants guy, but it is problematic.

This year, we hadn’t heard much from him since April. A week or so ago, he texted me to inform me that his dad had been diagnosed with stage 5 Alzheimer’s, and as a result, he wanted The Boy for the last week in July so that he might be able to see him before it’s too late.

While I feel absolutely awful for my ex-father-in-law, as he is and was rather a sweet guy, our plans for the summer have already been made, and a huge part of that summer includes camp for The Boy.  He has always looked forward to summer camp and ESY as a highlight of his year, and when I asked him if he would prefer to go to Dad’s and miss camp, he said he thought his dad needed to make some other arrangements.  Out of the mouths of babes.

I informed the ex that the last week in July was out, but we would be happy to discuss times when The Boy was not in camp or in school, which left a few weeks in July and exactly one week in August.

He obviously couldn’t get his act together in time to make anything happen in July, but expressed interest in the one week in August, the last week before school.  If you know any child on the spectrum, you know that transitions like going back to school are a huge, huge deal, and just contemplating The Boy making a long trip in that week was making my head hurt.  But I knew in my heart of hearts that probably nothing would come if it anyway – sad, I know.

Sure enough, the ex wanted to bring him back on the first day of school, and I explained that that would not work at all.  He responded by suggesting The Boy fly by himself within an airline assistance program…

Uh… yeah, right.

How friendly are these skies, anyway?

How friendly are these skies, anyway?

In the past when he has suggested this, I have flat out said no.

This time, I didn’t.  I called his bluff.  He wants to pay for a plane ticket, pay extra for special assistance that in all probabliity isn’t even available, all when he is many hundreds of dollars behind on child support? I told him our limitations in terms of airlines that fly into this general area, and suggested he do some research to see if they were even available.  He said he would, and he was excited to have The Boy that week and be able to go camping with him.

Sigh.

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.

Love & Linens

tea towelFor my birthday, and then again for Christmas, The Man got me gift certificates for a locally owned, independent kitchen store that stocks really nice things that I would never, ever buy for myself.  Early this spring, I was able to finally go in and choose some things to purchase, like a pair of high quality tea towels with some simple stripes in my favorite beachy colors.

I was hesitant to even put them in the kitchen, but that’s what I bought them for, so after a couple of weeks, up they went, and silly as it was, I got a kick out of seeing them everyday.

And then we had a spill on our new glass top stove, and in haste, The Man grabbed one of the new towels to wipe up the spill…

And then one day recently, The Man came in from mowing the lawn or doing some other thing that makes him incredibly sweaty and dirty, and washed up in the kitchen sink, grabbing the second of my new towels before the thought even crossed his mind that these were not intended to withstand man-dirt.  As soon as he pulled away and saw the destruction he had left in his wake, he knew there wasn’t much he could do to bring it back to life.

“It’s OK,” I said.  “It’s just dirt.  We’ll wash it,” I said, knowing full well that it was probably toast, just like it’s mate had been.

A few days later, I saw one of them in his pile of rags to take to the truck to use for painting or other handyman uses. I think I flinched and said something like, “Oh, my birthday towels…” I was totally not intending to make him feel guilty, but just reacting to my silly little towels and their short life span.

This past week, after a change in evening plans necessitated a fast food meal for dinner instead of our planned dinner, we were ready to take our two vehicles home, The Boy in The Man’s truck, and me alone in my little car. The Man called me over to his window before I got into my car and handed me a craft paper gift bag, with a ribbon and contents wrapped in tissue – all this from a man who isn’t big on gifts.

He had gone back to the kitchen store and picked me up a couple of new towels to replace the ones he had accidentally ruined. “I know they aren’t the same pattern, but I thought you’d like these anyway,” he explained, slightly embarrassed.

I can’t put into words how much I love him. Not because he bought me some tea towels, but because he cares enough to notice, and knows how to make it right. Because he knows it’s the small stuff, the “little bit of everything,” that matters so much in the long run.  Yep, I think I’ll keep him.

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.