Feels

He loves so deeply.

The Boy, soon to be a man, is quite upset. His favorite counselor is leaving his after school program at the Autism Society. Today is her last day, and no one has outright told him or prepared him. Yet he knew.

Last night, he hesitated for a minute when I asked if he wanted to snuggle. I knew he needed some extra TLC. I offered again, and he came and snuggled with me, falling asleep for about twenty minutes. This heavy boy, with so much hair, and his steady breathing on my neck. I didn’t dare move. Because he needed it. To be held, to be protected and told everything was going to be okay. After while, he woke up and wandered back to his room.

When he woke up this morning, he took extra time snoozing and hanging out in his pajamas, whimpering every time he thought about this being her last day. I was cheerleading, getting him to do the each thing in his routine, but trying to give him space. He expressed his wish that it was this past Monday, just so he could have more time with her.

He’s been left so many times. And he loves so deeply.

WordPress is wonky

I’ve tried to post the past couple of days and WordPress wouldn’t… work. I apologize if this post isn’t formatted to its best, but I’ve resorted to using the app on my phone.

Anyway, I thought I’d post an update since it has been awhile. The Boy is doing well. We are both still in counseling, and he’s still struggling with coping strategies to deal with reality. He’s trying his darndest to pass the written test for his driver’s permit, and unfortunately, there are no accommodations or modifications in the real world. I think this is something many teens and young adults on the spectrum face, especially as they age out of the system and resources are suddenly sparse. I see his struggle and feel even more to get to a community where acceptance is more common. This place just ain’t cuttin’ it anymore.

I’m doing much better than I was. Dealing with depression and anxiety from such a sudden life change was bewildering in and of itself. It has been almost two years, and in some ways it seems like two weeks, others like two decades. Mostly I’m okay being alone, and sometimes I think it would be nice to go on a date. It’s progress. 
We have had our house for sale for six months. Unfortunately, that guy I’m not supposed to talk about had very particular views about how it needed to be built, and those don’t translate well to other people’s tastes, I guess. We’ll see what happens. The hardest part about selling a house in our case are the showings. We bust our behinds to make the house look presentable and get two cats who don’t like being in their carriers too much out of the house. The showings also set The Boy off, who is convinced that people take his things when he isn’t there. Then people don’t show, or don’t come inside because they don’t like the curb appeal, or the yard isn’t big enough… whatever the case may be. It’s disheartening.
We are all waiting for some of that good karma to come our way so that we can move on to bigger and better things. Any day now.
The bright spot since last fall has been my writing. I am now a published author, and… it’s truly an amazing feeling to have a dream come true. I’ve gone from having to get up at 5am in order to write because my then-husband didn’t want to “compete” for my attention, to being supported by my family and friends, and actually making money (well, kinda – lol) from my words. More importantly, I’m connecting with people who like my stories, which is all any of us really want, anyway. Feel free to find my author-self on any of the socials @AMIalacci or visit my website at amialacci.com. I’d love to see you in that new part of my life.
I hope you are all well. I miss blogging, and hope to add some posts from time to time. Things can only get better, right?

Change, The Only Constant

A year ago, I posted about my parents moving in. It has been so, so good for all of us. I realize every day how lucky I am to get along with my parents so well. Emotionally and mentally, I am better than I was. I think The Boy is better, as well. We both have fantastic therapists, and are involved in our hobbies (Tae Kwon Do for him, and writing for me).

But change is constant, isn’t it? And when I posted a year ago, I alluded to more plans in our future. Well, things are FINALLY starting to roll. I am purchasing a 35′ camper early next week that is stationary at an RV park nearby. This is where The Boy and I will live for the next year and half!

Downsizing to 285 square feet presents its own challenges for anyone, and for The Boy, we’re considering just which belongings will come to the camper, which will not, and just how we’ll manage all the new ways of being in our tiny home.

We are also selling our current home and shopping for a home about 5 hours away in a college town/state capital that has multiple Targets and even a Whole Foods. Civilization, y’all. Grammy & Poppy and the kitties will move in there and get it ready for us.

I’ve missed living in a city. But more importantly, as my parents age, and my son ages out, I’m going to need some help, some resources, and some respite. I can’t get any of that where we are. The Boy will need to find meaningful work – there’s nothing remotely like that here for him. The people there are diverse and tolerant. The people here are significantly less so.

Today, The Boy’s room gets painted a boring beige in preparation for showing the house. This is his biggest anxiety about our current changes. He loved those Toy Story clouds on blue sky ❤

New adventures for us on the horizon. I’ll keep you posted! blue-sky-clouds-countryside-1048039

The Real World

The Boy has had a helluva week. That means I have too, by proxy.

After a day and a half at a private driving school class, he was kicked out. Despite assurances to the contrary, the staff was not willing to work with him and for him to make sure he learned the material. They acted like I hadn’t been explicit about what his learning needs were. I asked if he could stay in the class just to get the instruction without taking any assessments. Not only did they refuse, they would not refund my money.

Then I found out that this entire summer, when my son went to the local pool three times a week with his autism camp, one of the lifeguards belittled the kids from camp, even commenting that she didn’t get “paid enough to deal with these retards.”

fist-blow-power-wrestling-163431

I’m not naive enough to have ever believed the “real world” is or ever was prepared for our kiddos. But it’s extremely difficult to watch your child get pummeled by the ugly out there. (And I use “ugly” as southerners often do, to describe someone whose soul is full of hatred, venom, and bile.) It’s even more difficult to watch the “real world” get uglier to “the others” in our society by leaps and bounds, every damned day.

It’s very hard to hold on to hope.

This kid has been rejected, abandoned, and discriminated against far too often in his 16 years on this planet. And he doesn’t deserve it.

Waiting

(This post was written in April, but I haven’t published it until now.)

Here I sit, waiting.

The Boy and I are at an amusement park on a two-day band trip. And he is waiting in line by himself, to ride a rollercoaster by himself. And I wait, hoping he understands any directions given to him, and isn’t taken advantage of by others in line. But when I offered to go with him, he declined. He’s a teenager.

No one in the band offered to include The Boy in their group today. No teacher made the effort to ensure he was included, so he just wasn’t. He has to pal around with his mom all day, wondering what the other kids are up to. Not that he really minds, but this isn’t inclusion. This is separate but equal.

I can’t make other kids include him. And when I suggested a peer mentoring group to the school administrators, I was ignored.

So, I wait. And I hope that someday, a peer will take the initiative to befriend my son as s/he would any other person, and include him. Until that day, we make do with what we have, each other. Allowed to come along, but not really a part of the whole.

*ps* He enjoyed the ride and even went on a different ride by himself later.

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Occupational Course of Study

Food Barn pin from first paycheck job. / c. 1989

Food Barn pin from first paycheck job. / c. 1989 – Nate Hofer

As part of The Boy’s course of study, he must complete 225 hours of competitive employment outside of the school day, which means he has to get some kind of job. The letter from the coordinator basically said to ask friends who owned businesses or worked for one to find a position for him.

At first, I thought he could volunteer with the dog rescue that I’m affiliated with. We went to help socialize some kittens one day, and the urine smell was too much for him. He wandered around, not helping, and it was kind of a disaster.

Since I don’t have too many friends here, and the ones I do have are not in a position to hire The Boy, I’ve been trying to wrap my brain around just how he will get this graduation requirement completed in the next two years.

I met with a woman from Vocational Rehabilitation, a state agency that helps the less-employable with finding a job, training, job coaching, and in The Boy’s case, transitioning from a school-sponsored work assignment to the real world upon graduation. I asked her if we could get help finding a job for this requirement, and she had no idea what I was talking about. (Really?…)

Next, I emailed the district coordinator with my concerns: Finding a job that would allow him to work 10-15 hours a month, with someone who has an inkling about autism (keeping in mind that it took me 5 MONTHS to find a job when I moved here), and there was no job coaching or anything available.

Her response was fairly glib, and included an offer for him to do volunteer hours if I was “uncomfortable with him working in the community.” She also admonished me to not be “afraid to allow him to keep moving forward vocationally.”

(Excuse me while I go punch something)

Afraid? I asked for help identifying businesses and owners who may have worked with kids in the program before, and I got passive aggression and vague suggestions of libraries, dry cleaners, potato farms, and movie theaters.

Kids become adults. Kids become adults. Kids become adults. Kids become adults.

Kids become adults. And the fight continues.

Time for the Truth

It’s common in the autism community to hear that as our kiddos get older, the challenges just change. They’re no more difficult or less difficult to handle, they are just different. That’s what you hear, and it’s supposed to be reassuring, I guess.

And maybe that’s the truth for some people. Maybe even most.

But I can’t say that’s been our experience. Things are harder now than they’ve ever been.

And maybe that’s not all autism’s fault. I’m sure the fact that I keep marrying losers who leave doesn’t help, and moving to a state that has substandard resources and a less than stellar educational system contributed. But at the end of the day, autism itself isn’t what has made things so difficult. It’s the anxiety.

Anxiety often shows up on the coattails of puberty, waving at you with a smug look on its face, saying, “I’m moving in and taking over now. Take a seat.” It shoves you down on the couch, flexes its muscles and commences to shattering and dismantling progress you’ve made, trust you’ve built, and your sense of safety.

The Boy is on medication for anxiety in addition to the meds he’s taken for a long time to help him focus at school. The medication helps. Most of the time. But there are times when the anxiety is too strong, and it combines with the confusion caused by being wired differently, and the roller coaster ride sets off. Every three minutes, a wild mood swing, sometimes accompanied by erratic behavior and lashing out, physically and verbally. And you just have to hang on for dear life until it ends, which is sometimes hours, sometimes days. And by “hang on,” I mean worry as hard as you’ve ever worried about your kiddo before.

And when things have calmed down, you find that you are a special kind of tired you’ve never been before. Physically and emotionally, a bone-weary tired that makes you fear going home because there might be a turnstile at the door, with another roller coaster ride waiting for you.

I’ve heard in the autism community that the anxiety lessens as they get older. And maybe it does for some people, maybe even most.

But what if it doesn’t for us?

When a Community Isn’t

The Boy had a pre-contest concert this past week. And prior to that concert, he was behaving oddly, suddenly announcing that the band sounded terrible and that he didn’t want to perform. I’m still not quite certain what instigated this, but I think it stems from the change in band directors this year, and all of the changes he’s had to deal with recently. He had purchased a conducting baton online and when it came, it lasted about a day before breaking. I attempted to fix it, but the morning of the concert, it broke again, in two places. He almost didn’t get out of the car at school.

Suffice it to say, it was a perfect storm for a meltdown, and I wasn’t sure I wanted to put him in the high-pressure situation of a concert.

He went back and forth all day, and finally, ten minutes before we needed to leave to get him there on time, he decided that he would get dressed and go. We went, he performed, and all was fine. My nerves were shot by that point, but as I sat with another autism mom whose kiddos are in the band, I was breathing a big sigh of relief. The band was still onstage, being clinicked by a band director from a neighboring school. The Boy was wandering backstage, occasionally making an appearance in the wings with a new baton a friend had purchased and brought to the school for him (another long story!), conducting as the band was clinicked.

And then, another parent approached me.

It was a mom I knew by sight of a girl in The Boy’s grade. I had chaperoned their 8th grade band trip, as her husband had. I knew they also had an adult son on the spectrum, and they often say hello at band events. She had a book in her hand and began to tell me how wonderful it was, that she had just finished reading it, and had I ever considered a gluten-free diet for The Boy?

I groaned, inwardly.

No, we hadn’t tried it.  Yes, I was aware it helped many kids, but not all, and yes, I had considered it many years ago but decided against it largely because the only things my kid would eat were pizza and grilled cheese, and if I took those away he would starve.

She looked at me with some consternation and said that she would try anything if there was any chance it would help.

Well, thankyouverymuch.

She spent another few minutes urging me to look up the author and read the book before making her goodbyes and wandering back to her seat to wait for the band to be released. I turned to my other friend, explained what the conversation had been about, and we shared a bit of a laugh, as her son on the spectrum has a bit of a love affair with sugar and junk food.

If we can’t get patience, understanding, and acceptance from each other, how do we expect to get it from the rest of the world? At the end of a long, anxiety-ridden day like I had had, the last thing I needed was to have another autism parent try to get into a polarizing discussion about treatment options and then judge me for not making the same choices for my son and my family.

There’s one thing an autism parent doesn’t lack and that’s a sense of guilt for not doing enough or being enough. It doesn’t matter that it doesn’t make sense, the feeling is there and never quite goes away. Let’s not pile it on for each other, ok? Can we at least promise to do that? Within our own community? Can we?

Fairy Tales

Some of you may have seen my FaceBook post this past weekend where I mentioned that I was going out of town by myself, ostensibly for a self-imposed writing retreat. That was the major impetus behind it, but the not-too-distant secondary reason was to dispel some ghosts.

When the IM (henceforth known as the Invisible Man – props to Jim for the suggestion!) was a part of our family unit, we would often travel on day trips to Wilmington, NC, about an hour and a half from our home. It’s a city, so it allowed us to escape from the small-town mindset that pervades the area where we live. Diverse people live there, progressive people live there, and there are things to DO. We would park our car on Ann Street, walk down Water Street along the Cape Fear River, go to the Cotton Exchange (which is a maze of shops and eateries in a historic building), stop at one of two or three regular places to eat, head back up Front Street (the main drag), and hop in our car and go home. It was always enjoyable, a fun way to spend the day. The Boy loves walking, and would often try to get us to walk further, but me being 43 and sedentary, and the IM being in his 60s, we would bribe him with ice cream because the walking we had already done was plenty.

Then, when the IM left last year, it felt like I couldn’t enjoy Wilmington anymore because of all the memories. To not be able to enjoy something that you love because of another person’s actions… well, it didn’t seem fair, on top of everything else. I didn’t want to be driven out of one of the only (progressive, cultured) havens left to me here. So I thought I’d kill two birds with one stone – get away to write, and get back to Wilmington to reclaim it as my own.

It was an amazing experience.

The Boy pointed out to me before I left that the last time I had been away from him overnight by myself was four years ago, while attending a work conference, which only reinforced the need to do this.  And need it, I did. I thought about myself as a teenager, and what I thought life was about then. I would have told you life was about having a career that you love, yes, but also about finding someone to love, get married, and have kids. My twenty-something self would have said the same, as would my 33-year-old self.

I wish I had done a weekend like this sometime in that span, the younger, the better. I wish the possibility of remaining single had been an option I actually considered. I wish our cultural norms didn’t rely so heavily on the tradition of marriage, of “Mr. Right,” of our wholeness being dependent on finding someone else to complement us.

We are enough.

We do our girls a disservice by not allowing them to see themselves as the source of their own happiness, by expecting marriage (and children), and by painting singleness as something that needs to be temporary or remedied rather than a perfectly valid and healthy way of being. EVERY girl should live on her own for a bit, do things by herself, make her own money and manage it, be the source of her own efficacy. If only so she knows that happiness isn’t dependent upon an attachment to another person.

I was always taught to be independent, and I still saw marriage as the goal for such a long period in my life. I wonder how my life would have been different if our society had given singleness a spot at the table, too.

(Caveat: this is not regret. Life is too short. I have an amazing son I wouldn’t give up for the world, and I wouldn’t have him without my first marriage. I’m still working out what gifts I may have received from the second marriage, but I know they’re there.)

I’ll hop down off my soapbox, but I encourage you, ALL of you (yes, you GUYS, too), to travel somewhere alone for a weekend. Spend some time with yourself. Entertain yourself, do what YOU want, and go eat somewhere alone. I guarantee you will enjoy yourself.

 

Communication Skills

Today’s timeline:

10:32 AM – I get an email from The Boy which seems to indicate that A) someone told him drivers’ ed is not available for him – unsure if they told him “never” or “not right now,” and B) someone told him that he can’t hug girls – an ongoing issue that the school has admitted they have no idea how to handle. Two negative interactions with authority figures, and he is upset.

11:18 AM – The Boy’s Business teacher emails me and the special ed teacher to say he had arrived 15 minutes late – an ongoing issue that I don’t believe has even been addressed, other than to mark him absent (?) – and also that The Boy sat down and began to “color.” When asked to put it away, he got angry and left class. (Why they insist on saying “color” and “coloring” as if he’s a toddler, I don’t understand. It’s super dismissive. He is drawing, but I digress.)

11:27 AM – The Boy’s special ed teacher responds, asking if he returned to class because he had brought his “coloring” stuff back to her room and left again.

12:09 PM – I respond asking someone to update me, and if my son is ok.

It is now 12:35, and no one has responded to me.

If he had an aide, like he had in middle school, the aide would have known he needed to decompress upon entering Business class, and explained to the teacher to let it go this time (and indeed, would have made sure he was on time to class). If he had an aide, she might have been able to help him regulate his emotions so he could stay in class. If he had an aide, they would no where my child was. If he had an aide, maybe she could respond to me to let me know my son is safe and sound.

Three weeks ago, something similar happened when he got upset upon boarding a bus for a field trip and noticing the girl he has an interest in was absent. I received emails from him saying he got left behind, that he couldn’t find his special ed teacher, yet no email or notification from the school. When I called, the secretary kept trying to put me through to the special ed teacher’s room, and there was no one there. Finally, I sent my mom over to find out if they even knew where my son was. He had started walking toward the highway, and the new assistant principal (who kept advocating for him to just go home with my mom) didn’t alert anyone that she had him. The principal and the police liaison got in a car to go find him… After my mom arrived, SHE called me to update me, and it wasn’t until much later that the principal called to tell me what had happened.

I shouldn’t have to wonder about my son’s whereabouts and safety. I shouldn’t have to contemplate a $500 monitoring system like AngelSense because school personnel can’t be bothered to let me know what’s going on.

I think The Boy is much better communicating, at this point, than school personnel. When/if they get back to me to let me know my son is safe, I’ll be requesting a meeting, ASAP. This is beyond the pale.