Child Support stopped without my knowledge. Friend of the Court said they sent me something that had to be sent back saying The Boy was still in high school. I call BS. Yes, we moved in July, but also YES, I have mail forwarding, so what gives?

In order to get it reinstated, I have to petition the court for a hearing… Nuh-uh. Pay money to them because they screwed up, travel 14 hours for their mistake? NOPE. Luckily, The Boy’s dad has agreed to pay me as court ordered outside of the system. Fingers crossed this is something he will actually follow through on.

I now have guardianship of The Boy. Man was that a fun process (NOT). And I’ve been going round and round with Walmart pharmacy who cut off my access to his prescriptions even though I have reams of proof that I am his guardian. The store sent me to the customer service line who had no clue, but eventually sent me to the website to create his own account, which wouldn’t verify him and is now sending me back to… you guessed it! THE STORE! To produce a non-existent photo ID so they can verify The Boy is actually The Boy.

And we narrowly averted having to schedule another appointment with a psychologist to “re-do” his autism diagnosis to satisfy new Medicaid requirements for his after school program. Rumor is Medicaid is requiring this every 3 years now… Even though Autism never goes away…

So, I’m done fighting today. I can only be a warrior so many hours a day.

I hope the rest of you are winning your personal battles. And that you never have to deal with Walmart.

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.

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.

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?

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.

I know it’s been quiet around here. I’m sorry for not posting for so long. But as many parents, and especially special needs parents will tell you, there’s only so much of me to go around. I’m desperately trying to finish the first draft of the novel I began in November, and I am mere paragraphs away. Then I can allow myself to get back to my regular routine of writing in multiple spaces for multiple purposes.

I have much to share if you’ll bear with me a little longer! ❤

There are times when the various people in The Boy’s life reach the end of their list of strategies, and pull back, saying, “I didn’t know what to do.”

It’s ok.

I’m his mom, and I reach that point quite a bit.

When Grammy reached this point the other day, I thought a bit about exactly what it is that I do when The Boy is heading toward a meltdown.

1. Try to get him seated and then sit myself.
2. Listen to what is making him upset.
3. Acknowledge his feelings (“That is upsetting. I’m sorry.”)
4. Offer to help – this usually is “not possible,” according to The Boy.
5. Try to redirect the conversation from THIS HAPPENED to WHAT WE WILL DO ABOUT IT.
6. Offer suggestions. If these are rebuffed, ask “What can we do?”
7. Repeat 2-6 until he is calm enough to come up with a plan moving forward. It may make no sense. It may be fantastical or improbable. But looking forward allows him to move on from what was upsetting him.

This can take some time, or no time at all. I’ve found that #2 is the most important, and that if you do this process enough, it becomes easier and easier for him to process.

This is what we do. It may not work for you – every kid with autism is different. It has worked for us, and helps build our relationship each time.

I woke up early today to get some more work done on my Nano novel, as I have been doing every day since November 1. But I can’t. No, I really can’t.

I stepped into my office and nearly retched. I saw one headline and began to sob. I knew the result in the wee hours, but the headline read, “What do we tell the children?”

My husband said I should stay home from work. He’s probably wishing I had stayed in bed so we could hold each other and put off starting this day a little longer.

But I didn’t. I got up, put my yoga pants on and came in my office to write. I took a quick detour to TheBoy’s room and held him tight for a moment, and now I’ve started my day.

I won’t miss work today, even thought we have suffered two sleepless nights and I still feel like I could vomit right here on the keyboard. I’ll get The Boy ready for school, and we will go about our normal routine. I will pull my loved ones around me like a cloak, and we will love each other, work hard, and play, just as we have.

I will also make phone calls and write letters until my local and state politicians know my name. Just because there is an R next to their name doesn’t mean they don’t work for me. And we have work to do.

Now that guy at the top? He doesn’t work for anybody. Don’t be fooled. Let’s just hope they gave him fake codes.

We have to sit tight and hunker down for three and a half years. And then we’ll have to make one hell of a noise if there’s anything left to fight for.

What do we tell the children? We tell them that sometimes even adults make mistakes, and that just like when you break a plate, saying you’re sorry doesn’t fix it, our country is broken right now. But when things get broken, we try to fix them first before throwing them away. And we’ll need their help to do that.

That’s what we tell them.