Tag: autistic child

upset ethnic woman screaming in room
Posted in Autism, Learning Disabilities, Long Distance Parenting, Motherhood, Non Custodial Mom, Non Custodial Parent, Non-Custodial Dad, Special Education

Lessons Learned as an Autistic Parent

Posted on by cmfalato

No matter how far you come with your autistic kid, something always comes back to bite you in the ass. When you’re a long-distance mom, you just blame yourself when it happens. Don’t get me wrong — I don’t wallow in self-pity. I don’t feel bad for myself. I just feel personally to blame for my son’s meltdown in school. I should’ve done something different. I should have tried harder. I should have been there.

Now, what I could’ve done had I been there — who knows? At this point, I’m dealing with a very independent 21-year-old. A force of nature who knows himself well, for the most part.

Teaching him his triggers, how to handle them — that’s something I can’t do for him anymore.

Sometimes, I wish I could hand my son my thirty-odd years of hard-won knowledge. I want him to understand the real world. I wish he could just absorb it. Maybe because I’m autistic myself, I fight hard for him not to end up like me. I was autistic when autism wasn’t cool. My time in elementary school predates IDEA and FAPE. I was just a lonely kid who got picked on for not fitting in. I was masking before masking had a name. I know the consequences of doing so. Pressure builds up until you explode. Even as a writer, I know what it’s like to have no words for how you’re feeling. There is no way to express the anger and frustration.

I still have my moments. But these days I’m bulletproof. I wish my son were too. I know he’s not. And I know he’s got a long way to go. At 21, you don’t know jack about the world — none of us do. As a parent, you feel guilty when you hold a kid accountable for something he knows better than to do. This feeling applies even on the autistic spectrum. Like you personally did something wrong.

Nobody wants our kids to miss out on things. We don’t want there to be consequences for their actions. This goes double for long-distance, non-custodial parents. We carry this dream of how we’re going to spend time with our kids. We have this idea of what could’ve been different, better, if we’d been there.

It gets easier as your kids get older. But it never goes away.

Despite the guilt, I still have to hold JR accountable

I might feel guilty about doing it. However, today, my son is facing the consequences of losing his temper in school. Something he knows better than to do. I’m figuring out what supports to ask for from the Arc of New Jersey. At the same time, I’m reminding myself that he’s a fiercely independent 21-year-old.

The world is not always kind. There will be consequences for his actions. I hate it. I don’t want him to miss out on something he’s looking forward to. And yes, his routine has been all over the place this week. But I’m still his mother. And there still have to be rules.

For a long time, I tried to steer my son away from his triggers. I tried to stop him from running into them. I get it now. It’s time to teach my son to spot his own triggers and to let him feel the consequences when he doesn’t. I think I’m a little too late even for that. I should’ve started this when he was 18.

My other problem — as an autistic adult — is figuring out how to treat my son. I want to treat him the way I would’ve wanted to be treated at his age. I also need to get him ready for the real world. I can’t put him in a cocoon. I can’t ask the world for acceptance when he melts down in public.

Okay, I can ask. But it’s not going to happen. I can’t ask him not to be who he is. And he’s in a group home, which puts me even further away.

Part of me is laughing my arse off. Because yeah, I raised a kid just like myself. I’ve had to apologize to my own mother for the same things she drove me nuts over. I am now living through those things myself. The loud music. The constant phone calls. The cursing. It’s getting to be pretty hysterical these days. Really hysterical.

There comes a point when we try to shelter our autistic kids. We never want them to get bullied. Never want them to get hurt. Never want them to miss out. And sometimes we shy away from setting limits. If you’re a Gen X parent, this can be especially true. You grew up autistic before IEP meetings existed. Back then, we were just the rebels without a clue. We work so hard to protect our kids from what we went through that we forget they are growing up. They need rules. They need consequences.

We autistic moms of autistic kids are not martyrs. We’re just in over our heads and won’t admit it. We think we should be able to fix everything. But after a certain age, our kids can fix things themselves. We need to stand back. Let them make their own mistakes. Let them learn.

I turn back to my computer, check my email, and realize it is 9:07 AM. My dogs are still in their crates. I haven’t showered. If I don’t get up right now, I never will.

My son is at school. He’ll be there tomorrow while his friends go on a field trip. I give myself permission to get back to work. It’s okay. I am not a bad mom. In fact, I’m a good one — for knowing that I’m not perfect and that I make mistakes.

I decide it’s time to stop sheltering my kid from the world. Today.

He’ll be better for it.

Will I?

–CMR

Posted in Autism, Motherhood

The Evil But Why’s???

Posted on by cmfalato

Raising a good autistic human takes a lot of patience … and clear boundaries

A Dammit Doll almost lost its life today when I lost my patience and yelled at my son.

Blame the But Whys.

“Mom, can I get the Nintendo Switch 2 for Christmas?”

“No.”

“But why?”

“We talked about this when the Switch 2 came out, Joseph. I told you that if you wanted it, you had to save your money and pay $200 of the cost yourself.”

“But why? It’s on my Christmas List.”

“Because that’s what we agreed to.”

“But why?“

“It’s expensive. Your dad and I can’t afford it this year.”

“But why? I want the less expensive one.”

“And you still have to save your $200 of your own money pay for part of it yourself.”

“But why?“

“Joseph. Patrick. R—. The III. I am tired of having this conversation. If you want the Switch 2, you have to save $200. That’s it. No further discussion.”

“But why?”

“Leading Man #1,” I begin…again…taking a deep breath and gathering what’s left of my quickly vanishing patience. “We’ve been talking about this since the Switch 2 launched in May. I’ve been very clear what you need to do: save $200. When you go to the ATM and withdraw your spending money each week, take out $10 less. That’s $XX instead of $XX.”

“But why?”

My patience breaks. “Because you’re 24, almost 25, and if you want things, you have to pay for them! Your dad and I didn’t ask Grandma R– and Grandma Miller for money when we were your age! We saved our own money and paid for them ourselves!

Asking me to pay the full cost of something you have to save for over and over again is NOT cool, J–. I love you nearly and dearly. You are the best and most important part of my life, but NOT cool!

Also, you know better! You know I won’t change the rules no matter how many times you ask me! You also know how to budget and save money!”

Yes, I’m a tough parent.

“But why?”

I reach for the Dammit Doll I haven’t needed in 6 months. There’s another one in my car for Connecticut traffic. I’m impressed that one still has its stuffing. ” JR, I love you, but I’m not having this discussion again. I’m hanging up the phone. I’ll call you back when I calm down.”

Before I get hit with another evil But Why, which might completely break my sanity, I hang up the phone.

It doesn’t help that, just before asking about the Switch 2, Kiddo told me he’d just spent the last of his spending money on pizza and video games.

I sit at my desk, the Dammit Doll in hand, clearly afraid it’s about to meet the same fate as its Subaru-residing sister. I set it down, rest my elbows on my desk, put my face in my hands, and groan.

“AAARRRGGGGHHHH!”

…and my phone rings. My “just-like-me-and-his-father-when-we-were-married” – think when thunder and the ocean collide, (Saves the Day, Rocks Juice Tonic) – son, calling to take up the fight again.

I feel horribly guilty, but I don’t answer the phone. I’m angry. I need a minute to calm down.

The Dammit Doll continues to look on in fear.

My husband comes upstairs. What was all the yelling about?

My son was badgering me about the Switch 2 again.

Didn’t already talk to him about that? Like, 1,000 times?

Yes. He’s being a belligerent pain in the arse.

Yes, autistic, intellectually or otherwise disabled people like my son can be belligerent, rude, and disrespectful. They throw temper tantrums – very different from meltdowns – when they don’t get their way. Autistic kids occasionally, knowingly, break rules.

I love my son. That means loving what’s good and bad about him, and accepting who he is, which, occasionally, is a real pain in my patoot.

I’m not talking about behaviors, tics, and quirks beyond an autistic person’s control. Meltdowns, social awkwardness, stimming, walking with your head down, lack of or mumbled speech, etc. are all acceptable.

Refusing to do something your mom has told you – repeatedly – you have to do and insisting she do it instead? NOT acceptable.

Autistic kids know their parents. Certainly, JR knows me. He knows exactly which buttons to push, and – typically. Today was REALLY an exception – WHEN to push them. Zoe and Sarai point out in the Guts podcast “Autism, Neurodiversity, and Belonging,” that autistic life is a resource hog. Autism takes a lot of time and mental energy. A lot of that energy goes into the careful observation and fine-tuning to the emotional air around us needed to survive in neurotypical society.

Both TheEx and TheCurrent (husband) know what will annoy, irritate, and generally set off my temper and how to do so. In the early days after our divorce, TheEx excelled at it. My son’s knowledge and ability in this regard trumps both husbands, combined.

I’m pretty amazed by that. I’ve been a non-custodial and/or long-distance parent for 20 years. I’m also constantly mistaking typical kid stuff for spectrum behaviors. It’s pretty easy to do, even if you’re a live-and-in-person (custodial) parent. I think it’s because I’ve seen JR excluded from, or unable to do, so many things. I’m so afraid of adding to that list, I overcompensate for what I think he’s missing out on. I dismiss rule-breaking. I chalk persistence and belligerence up to the autistic spectrum. That makes it okay, aka, un-punishable.

I used to tell myself I’d be a cruel – not compassionate, dedicated – parent if I disciplined JR.

Then I’d remind myself of the ultimate goal: raise a good human. Raising a good human, regardless of how they are neurologically wired, means establishing and enforcing boundaries and rules. Actually, rules and boundaries are more important for autistic kids than for their neurotypical counterparts. Rules provide structure, and routine, and a clear equation for what to do in social and other situations my autistic son – and my autistic self – find challenging:

If X happens, then do Y.

If X doesn’t happen, do Z.

If A says B, then you say C.

If A says C, then respond with D.

Slight oversimplification, but you get the idea.

I keep the rules simple:

Eat the lunch the group home staff packs for you. No throwing it out and buying lunch at the college cafeteria.

I set basic boundaries:

No calling me before 7:00 a.m. unless it’s an emergency.

I ask JR to set goals for himself – I set them for him when he was younger – and give him specific, step-by-step instructions for reaching them:

Save $200, or put $10 a week from your spending money into your savings account, and I’ll buy you the Switch 2.

I also establish consequences:

If you don’t save $200, I won’t buy you the Switch 2.

If you call me before 7:00 a.m. and it’s not an emergency, I won’t have time to talk to you.

You think a lifetime of this would vanquish the But Whys. You’d imagine after all these years of (mostly) disciplinary consistency, the evil But Whys would be extinct.

Nope. Those nasty things are alive and well. Based on that last conversation, they appear to be thriving.

JR calls again. The Dammit Doll’s yarn hair stands up on end. I sigh, take a deep breath, and prepare for the worst. I promise myself I’ll be patient this time.

Have you calmed down? My son asks in a solicitous voice.

Look, kiddo, I’m sorry I snapped at you. I should not have lost my temper. But these are the rules…

Says the woman who constantly crosses all the lines and breaks all the rules… (Brandi Carlile, The Story).

Apple. Tree.

The Dammit Doll survived…this time.

Cheers,

–C.

(Image generated by ChatGPT)