Tag: autism

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 Long Distance Parenting, Motherhood, Non Custodial Mom, Non Custodial Parent, Non-Custodial Dad

The Drive I Didn’t Take

Posted on by cmfalato

How I balance motherhood, self-care, and a deep-seated sense of guilt

My Son Calls Twice

My son calls me twice in a row that morning — right as I’m getting Rocky ready for training.

Twice.

That’s never just a casual “hey, what’s up.”

Later that day, he asks if I can come pick him up.

And just like that, I’m split clean down the middle.

On one side: that deep, instinctive pull — the one that says your child needs you, get in the car, go. It’s not gentle. It’s not rational. It’s tidal. It rises fast and urgent, like something alive moving through my veins.

On the other side: reality.

Can I physically make that drive to New Jersey on Memorial Day weekend?

Short answer: no.

Long answer: my back, my neck, my wrist — and let’s not forget my car — would all like to formally decline.

And I know it.

I know I need to stay home. I know I need to start being smarter about how often I make that trip instead of pretending I’m still capable of doing it like I used to. I also know that in a month or so, he’s likely moving into a Level I home, which means another long drive is coming whether I like it or not.

Still… I want to see him.

The Soundtrack of Loving Him From Far Away

Yesterday, I heard a song by Pink — “All I Know So Far.”

And it hit.

Hard.

I wanted to send it to him. Not just the song — the lyrics. The message. The parts that say all the things I’ve been trying to say to him for years.

Because this is what I do.

I build soundtracks.

I’ve been collecting songs for him forever — songs that explain how I feel, songs that say the things I can’t always find the words for, songs that carry lessons I hope stick long after I’m not in the room to say them.

It’s my way of still being there.

Even when I’m 210 miles away.

The Guilt That Never Packs Up and Leaves

Intellectually, I know I’m not a neglectful parent.

Not even close.

But try telling that to the part of my brain that believes, with absolute conviction, that a good mother is physically present. Every day. Every week. Not “when she can manage the drive.”

That voice doesn’t care about logistics or spinal alignment.

It just whispers:

You should be there.

And it doesn’t stop.

Reality Checks, Delivered by My Lower Back

I’m in the car with Rocky, heading home.

It’s been maybe 20 minutes. No traffic.

And my lower back lights up like it’s filing a formal complaint.

I breathe through it, try to relax, feel the pain travel through my hips.

And there it is — the answer, loud and undeniable:

New Jersey is not happening this weekend.

Not unless I want to arrive unable to stand up straight.

Meanwhile, in the World of Dogs and Chaos

A jogger crosses in front of the car.

Rocky launches himself toward the dashboard like he’s auditioning for a stunt role.

I yell — loudly — using a training command that, unfortunately, includes language I worked very hard to remove from my daily vocabulary.

The upside? It works.

The downside? I am now the person you hear in public aggressively swearing at her dog like a retired sailor.

Character development is not always linear.

Domestic Life, But Make It Slightly Ridiculous

Ten minutes later, we’re home.

Ella is in her crate, having miraculously not destroyed anything or peed in protest. She earns a piece of pepperoni, which she accepts like the tiny queen she is.

The dogs go outside. I head into the three-season room and kick off my boots — carefully placed there because one of these animals has a very specific hobby involving footwear destruction.

My husband calls on his way to Staples. He wants help figuring out how to connect his computer to two televisions as monitors.

Now, I can do this. I have done this.

But here’s the catch: I keep my tech current. He does not. Which means I would have to physically inspect whatever prehistoric ports exist on the back of his machine — and I choose peace.

I decline the mission.

The Life I Actually Built

I sit down, and my back reminds me — again — that I was supposed to ice everything last night.

It’s literally on my whiteboard. Right next to:

  • Socialize Rocky
  • Walk Ella
  • Walk myself
  • Write something
  • Read something
  • Duolingo (because apparently I’m learning Swedish now to read Fredrik Backman in the original language, like a completely normal person)

This is my life.

It’s structured, intentional, a little chaotic — and entirely mine.

I love my work. I genuinely look forward to it every day. That’s not something I take lightly.

But it exists alongside all of this — the dogs, the pain management, the guilt, the distance, the constant recalibration of what I can do versus what I wish I could do.

Choosing Not to Go Is Still a Choice Made Out of Love

I bring the dogs back inside — it’s too hot for them out there anyway.

Rocky practically puts himself to bed in his crate. He’s had a big day.

I head upstairs, boot up my computer, and start working.

Later, there’s a vet appointment for Ella (and yes, it’s exactly the kind of appointment you think it is, and no, I will not be elaborating further — because some things are better left implied).

And life continues.

The Truth I Keep Coming Back To

I didn’t get in the car.

I didn’t make the drive.

And that doesn’t make me a bad mother.

It makes me a human being with limits.

A human being who loves her son enough to stay functional for the long haul instead of breaking herself for a single weekend.

The tide still comes.

That pull toward him — it’s always there.

But sometimes love looks like showing up.

And sometimes it looks like knowing when you can’t — and finding another way anyway.

Posted in Autism, Long Distance Parenting, Motherhood, Non Custodial Mom, Non Custodial Parent

It Takes Guts to Live Without Regret

Posted on by cmfalato

Do I regret giving up custody of my child during my divorce? Short answer: It’s complicated.

Last December, I was interviewed by Guts Non-Profit about my life as a non-custodial mom to an Autistic, mildly intellectually disabled child.

It was a great interview. I share my story openly so that people who might be going through the same thing, or even something remotely similar, won’t feel alone.

I suffered a mental health breakdown during my divorce that forced me to take control of my mental health, actually advocate for myself to doctors, and, learn how to (mostly) not let my life fall prey to depression and anxiety. After a long road, I fully recovered and leveraged the experience to make me a better advocate for my son.

I want someone to hear that, and look me up on LinkedIn, or Instagram, and think “Hey, that happened to her and look at all she did after. I can do that, too!”

Being a non-custodial mom, giving up custody of your child, living 210 miles away from them for over half their life and still raising a strong, odds-defying, and just generally good human is hard… actually, it’s pretty emotionally devastating. And, it’s isolating. I’ve stayed fully connected to my son – we have a thriving relationship – and I have a great group of friends.

I’d love it if another parent was encouraged by that.

Divorce is – even if you’re the one who initiates it – hard. There’s this life you plan on when you walk the aisle, or, as I did with Husband #2, to whom I’m (knock on wood. Damien, can you come up here please. I need your head) still happily married, step in front of the justice of the peace.

Letting go of that life, and not having regrets about it…well, it takes awhile.

…and, as I say in the podcast and have said before here, the reasons you end a partnership don’t end with a divorce decree (or its equivalent).

I am happily remarried (Damien, get up here now please, and bring The Boxer. His head’s even more wooden than yours), and I’m on great terms with my ex.

My goal is to have someone newly divorced, navigating the initially contentious waters of a freshly minted divorce decree and child custody agreement, and have faith.

And then, of course, there’s the big A: Autism. I’m on the spectrum. My son is on the spectrum. I can have an existential crisis over a black bra and blue panties and still, successfully navigate an IEP meeting, or, since JR turned 21, an ISP (Individualized Service Plan) meeting. I have a successful career. My son is about to graduate college.

I really need someone to hear that and know they’re not alone, and that autism isn’t a living death sentence. (And if you need help navigating the K-12 special education system and/or post-21/22 transition, or even just someone to vent to about a recent IEP, just reach out anytime.)

(I’m serious. I had and have a lot of support for JR. My turn to pay it forward).

Moving on.

So, overall, the podcast was rattling along fine, even the hard parts, until they asked this question:

Do you regret giving up custody of your son?

If you listen to the podcast, that’s my full stop moment. Multiple reasons:

  • I’ve never been asked that question before.
  • I wanted to give a completely honest answer.
  • I don’t ever want my son to listen to this podcast and think “She gave me up and she doesn’t regret it? Do I mean that little to her? Was it that easy?”
  • What will people think of me, and the kind of mother I am, if I say “no”?

Do I regret giving up custody?

I’ve been so busy being a mom – and fighting so hard just to prove, mostly to myself I suspect, that I am every bit as good a mom as any one of my SUV-driving peers who is happily married, or if they are divorced, retained custody – I have never stopped to ask myself that question.

But do I?

Do I wish I had fought harder for residential custody?

Do I wish I had just sucked it up – and forced my ex to do the same – to stay in a stressful marriage?

Do I regret moving to Boston?

The “But Do I’s” might actually be worse than the “But Why’s?”

Hard to believe, I know.

You can listen to my full answer at 16:34 in the podcast itself, but the short answer is…

Drumroll please!

Add more dramatic tension…

No.

I have made so many mistakes as a mom and as both a custodial (when I was married to JR’s dad) and non-custodial parent. I’m human. Every child is, as trite as it sounds, different. The same thing that was great for your best friend’s kiddos, or even your own other child, might be wrong for the tiny human standing right in front of you.

Yes, I regret those mistakes. Not one of them was at all remotely harmful or devastating to my son, but still, I have those moments where I think back and wish I’d done it differently.

I’ve also had moments when the autistic spectrum, which can often be a royal pain in the arse**, unleashes its worst, and I’ve cried and wished I’d just stayed married, or I hadn’t moved so far away, or, yes, I didn’t give up custody.

**I know calling the autistic spectrum a pain, or saying it unleashes its worst is probably ableist. It’s not intended that way. BUT watching your kid spiral into a meltdown they can’t get out of, one they will feel endless shame over later, no matter what you say or do, is just that. So’s when your brain calls a full halt to your legs – invariably when you’re running late – because a tiny wisp of hair no one but you is going to notice is falling over your forehead. Triple that when you spend the entire day after a party replaying every moment, and everything you said, on your brain’s 3D IMAX theater screen obsessing over what you THINK you said or did wrong.**

But, do I actually, on an average day, which is most of them, regret that I gave up residential custody?

JR, I love you. You are the best and most important part of my life… but I do not regret letting you live with your dad full-time.

Or moving to Boston.

I wish, for your benefit, I could, or I could say I did. I want you to know how much you mean to me. I hope you don’t hate me.

I gave up residential custody because I knew where you needed to be, and I knew which parent was, at the time, best able to give you everything you needed then.

And I knew, at that time, it wasn’t me.

I am so sorry.

I’ve done a lot of hard things in my life. Letting you go, even just to live in another house where I saw and spoke to you all the time, even after I moved to Boston, was the hardest.

You are, however, who you are today because of that very reluctant decision. And J, you are everything a mother could ever want from a son, everything I thought and dreamed you would be, the moment in that delivery room when they set you on my chest and said, “Meet your son, Mrs. R–.” You have never, ever disappointed me.

You’re human, too. I’ve been disappointed in your behavior plenty. Can we talk about the video game budget, please?

Not you. You are perfect, exactly who you are.

I know that if I had fought harder, neither of us would be who or where we are today.

So, what should you do if you’re a non-custodial parent dealing with regret about giving up, or not fighting harder for custody?

Listen to the podcast, read the blog, and think, “Hey, she did it, and look at her and her kid. I did the same thing. I don’t have to regret this. I know it was the right decision.”

Because it was.

–CMR

Posted in Autism

Autistic Before Autism Was Cool

Posted on by cmfalato

Late diagnosis, Gen-X masking, and raising a neurodivergent kid when you had no idea you were one.

Memorial Day, 10:37 a.m. I’m heading north to Hobby Lobby.

Sunroof open. No music. Just the road.

My husband’s outside dismantling something in the yard. The dogs are asleep. Sun pours through my sewing room windows. I could be quilting.

Instead, I’m doing 75 on I-93. Highways are, paradoxically, the quietest place my brain knows.

Not physically quiet—mentally quiet. There’s a difference.

(At least until one of my three beautiful humans — Leading Man #1, Husband #2, or TheEx — calls with something “urgent.”)

Growing Up Gen-X Before “Neurodivergent” Was a Word

As kids, autism meant one thing. If you were bright but socially strange, you got labeled “Hyper.” Difficult. Too sensitive. Argumentative.

I spent four decades assuming I was just an oddball with strong opinions and terrible social timing.

Then, at 48, my therapist mentioned — almost in passing — that I “met the criteria for Asperger’s Syndrome.”

I’d been autistic my whole life.

I was also raising an autistic kid. How in the actual hell had I missed this???

Moving on.

The Noise Most People Don’t Notice

My brain notices everything. Every voice in a room. Every shift in tone. Every raised eyebrow. Every micro-expression from someone standing fifteen feet away.

Then it tries to fix everything.

If someone nearby seems unhappy, I instinctively start adjusting — changing what I’m saying, what I’m doing, whether I’m talking at all — until everyone around me is comfortable.

Picture those paper fortune tellers we folded as kids—folded again and again, until nothing’s left but paper dust. That constant adapting was my social strategy.

That was my social strategy for most of my adult life.

The Existential Wardrobe Situation

I can mix patterns all day when I’m designing something. Quilts, scrapbooks, retail displays — mismatched is fine, actually encouraged.

Wearing mismatched underwear? My brain refuses.

Blue polka-dot underwear with a black-and-white bra? No way. I know it’s illogical—no one sees it—but my nervous system ignores logic.

Autism is often described as a difficulty in processing sensory input. I describe it as opening my closet every morning and wondering which item of clothing is about to start a philosophical argument with my central nervous system.

The “Fix Everything” Instinct

If someone suggested something, I assumed it was an instruction. If someone seemed unhappy, I assumed it was my job to fix it.

This made relationships… complicated.

I spent years anticipating what people wanted instead of just being myself. Then I’d quietly resent having to do things I never actually agreed to.

My husband — patient man — eventually sat me down and delivered the note in its simplest form:

“Stop folding yourself into origami shapes and just exist like a normal human.”

It took time. But I got there. Mostly.

On the Missed Diagnosis

A lot of people assume an earlier diagnosis would have made everything easier. Maybe. But I’m genuinely not sure childhood-me needed the label.

What do I wish? That I’d figured it out in my twenties, trying to navigate adult relationships without understanding why things felt impossible.

But growing up autistic before autism awareness was common gave me a crucial perspective: I understand what it feels like to be the kid who doesn’t fit. That insight matters, especially as a parent.

Motherhood on the Spectrum

When my son was growing up, I had one goal: he was going to experience everything a neurotypical kid experienced. With modifications, maybe. With extra coaching, definitely. But the opportunities would be there.

So I taught him to drive. Took him out for his first legal drink at twenty-one. Helped him decode the unspoken social rules that nobody ever writes down.

The world doesn’t always rearrange itself around you. Sometimes you learn the rules of the game — and then you decide when to play and when to walk off the field.

Understanding my own neurodivergence made me a better parent for one key reason: I fully grasp the stakes and challenges my child faces.

The Reset Button

For years, I never knew why I craved long drives, writing, or time alone away from others’ emotions.

Now I realize those are resets—moments where the mental noise quiets and I can process all the day’s data.

Without them, the network overloads. With them, I work pretty well.

Reflecting on all of this, I’ve realized one thing: Autism explains me, but it doesn’t define me.

When I first got the diagnosis, I let it define me for a while. Then I stopped.

I’m autistic. I’m also a mother, a writer, a project manager, and someone who has spent decades figuring out how to navigate the world in her own slightly unconventional way.

Autism explains some things, not what I can do. Maybe it even explains why I write — because stories refuse to shut up until I get them out of my head.

Some people write because they enjoy it. I write because the alternative is worse.

After years of decoding the world, the biggest breakthrough is finally understanding how my own brain works—and that knowledge is genuinely liberating.

Even if it took fifty-four years to get here.

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)

Posted in Autism, Learning Disabilities, Motherhood, Special Education

Navigating Parenthood with an Autistic Child

Posted on by cmfalato

Vaccines, Math, Ben Affleck, Acetaminophen, and Eye Rolls. Lots, and Lots of Eye Rolls.

I’m Mom to an autistic – now young adult and waaay too much like his parents for my comfort – individual. That means I’m occasionally asked what I think when a new TV show or movie depicting an autistic individual hits streaming, or new information about what causes autism hits the headlines. Some common questions I get asked are:

  • Do you think vaccines/gluten/mercury/pollution, etc. causes autism?
  • Would/did you vaccinate your son?
  • Is your son really good at math?
  • Does The Accountant, The Good Doctor, Rainman, etc. accurately describe autism?
  • Do you think such and such therapy helps autism?
  • What do you think about what so-and-so politician/public figure/celebrity just said about autism?

and, rounding out the list:

Do you think there is/want a cure for autism?

My answers are, in order:

  • I don’t know. I haven’t read up the subject in awhile.
  • Yes. I weighed the risks and the benefits, and, for me, personally, decided the risks were/are too great not to.
  • Eye roll, but yes.
  • Double eye roll.
  • I don’t know. Here’s what current science says.
  • I haven’t caught the headlines lately.
  • If I roll my eyes again, they’re going to get stuck.

Of course, these are my answers now, over 20 years after Leading Man #1 (as I call my son) was diagnosed. That’s one-third of my lifetime and four-fifths of his. I am well past the initial shock – yes, it is shocking – of diagnosis. High school, the toughest part of JR’s life on the spectrum – and mine. IEPs are soul-crushing – is behind us.

I get it, though. I really do.

Ok, not the math thing. Yes, my son is good at math, but, as I’m one-half of his parentage, arguably the half he inherited autism from – it has to be coincidental. Math and I are NOT friends.

When JR was first diagnosed, I replayed every moment of my pregnancy, childbirth, and his first four years, looking for answers.

  • Was it the peanut butter M&Ms I ate for lunch every day at work?
  • Did that glass of wine at dinner that one time have something to do with it?
  • Should JR have gotten the then new to the market Merck chicken pox vaccine?
  • Was it something I did, didn’t do, was, or wasn’t doing?

It didn’t matter how many times the current science (I spent many hours out on PubMed, in the local library, in my college library, and online researching autism, vaccines, etc.), a school social worker, my son’s neurologist, or his pediatrician – or anyone else for that matter – said “It wasn’t your fault. No one knows what causes this,” I still thought I, personally, had done something wrong.

…and yes, back then, I wanted a cure. I’m a mom. I was watching my child struggle. I was watching the polite but disinterested avoidance his neurotypical peers treated him with and his reaction, and I wanted answers and a cure.

When your kid is hurting, you just want to know why. You turn over every grain of sand on the beach. You think that if you know why, what the cause is, you can fix it for them. Right, wrong, scientifically refuted, doesn’t matter.

…and yes, even if you think you shouldn’t, you want a “cure.” A cure will take away your child’s pain. A cure, you think, will make their lives easier. Right, wrong, scientifically refuted, doesn’t matter.

I am standing right where you will be in 20 years, looking back, and telling you, even autistic, intellectually, or otherwise disabled kids grow up and succeed. Just like their neurotypical peers, though, what that success looks like is unique to them.

Eventually, you get too immersed in the day-to-day of raising a disabled kid, and fall too much in love with that child just as they are to care about those things. You set up your kid’s IEP, their care team of physicians, social workers, education professionals, neurologists, etc., and life becomes…routine, or at least as routine as you and your kid’s life is ever going to get. Nothing on the spectrum is routine. You learn to protect your child – as best you can – from the harsh words of others and the polite distance of their peers. Your kid grows, and succeeds, and moves forward.

No, really. They do. I am standing right where you will be in 20 years, looking back, and telling you, even autistic, intellectually, or otherwise disabled kids grow up and succeed. Just like their neurotypical peers, though, what that success looks like is unique to them. My son is graduating from one of the three college programs for autistic adults he was accepted to next year, after a well-meaning school social worker told me he wouldn’t go to college at all.

Still, there are bumps – sometimes large, New York City or Chicago style sinkholes, in the road…and when, inevitably, your child hurts or struggles, you come right back to that beach with a shovel and a pail – and maybe an electron microscope. JR is almost 25, fiercely self-sufficient and independent, living in a group home, and wrapping up his final year of college, and I STILL have those moments every time – as it inevitably does, life isn’t perfect – something goes awry:

  • What did I do wrong?
  • Is there a way to make this better?
  • What if we tried..x, y, z new therapy, treatment, etc.

Here’s the thing: raising a human is harder than what the guy with his finger on the big red “deploy nuclear bomb” button does. You make the best choices you can for your kids based on the information you have at the time. No one, not even another parent, can tell you how to raise your children, or what choices to make for them. I definitely won’t. I’m your advocate. I’m here to support you in the here and now.

I’ll even lend you my electron microscope…

Cheers,

Cris

Posted in Autism, Learning Disabilities, Motherhood

Learning – Very Reluctantly – to Let Go

Posted on by cmfalato

Even autistic kids grow up and demand their independence

It’s a bright, sunny Saturday afternoon and I am sitting in a parking space immediately outside the front doors of a Wawa – the New Jersey equivalent of a gas station convenience store. While I was filling my gas tank my 22 year old autistic and intellectually disabled son, JR, headed into the store to get snacks and a soda. 

That was exactly 7 minutes ago. I paid the gas attendant (it’s illegal to pump your own gas in New Jersey for some reason) and pulled into a parking spot to wait for JR to emerge from the store 2 minutes ago. Right now I am sitting behind my car’s steering wheel, trying NOT to give in to the urge to go in and check on him. 

It isn’t easy. As the seconds tick by I keep thinking of what could be happening inside the convenience store. Suppose he couldn’t find the soda he wanted, asked for help, and the store clerk couldn’t understand him. What if he starts to have a meltdown? Will the cashier give him the right change? Will he remember to count his change? Suppose someone tries to steal JR’s wallet?

I grip the steering wheel tightly, crane my neck to see through the glass doors inside the store, and take a deep breath. “No,” I remind myself. “Not even on the pretext of getting yourself a cup of coffee.”

I sit back in my seat, take another deep breath, and grip the steering wheel so tightly my knuckles turn white. 

I wonder how many times I’ll put myself through this before JR going into a store becomes old hat to me. Before I stop worrying the worst will happen if I’m not there to protect him. 

Probably never. My dad once said that you don’t worry less as your kids get older, the worries just get bigger. You go from worrying they’re going to scrape their knee in on the playground to fearing they’re going to crash the car driving home from the mall. 

I’m mom to an autistic person. I’ve gone from fear of scraped knees to fear of JR handing a convenience store cashier too much money and not counting his change.

The fact is, children grow up and independent of their moms (and dads). All children. Even autistic kids. From the moment they exit our wombs, our children take baby steps away from us. Autistic kids may do it a bit slower than their counterparts. However, the result is the same. That baby boy you could scoop up with one arm and perch on your hip is suddenly a grown man who towers over you.

The difference is autistic adults still need protecting from the outside world.

Well, some do. If you’ve met one autistic person, congratulations, you’ve met one autistic person.

JR still needs protecting, but he also needs his independence. Like every other young adult, he needs to do things for himself; learn from his mistakes. I need to let him do that.

I also need to prepare him for the inevitable time when I won’t be here to protect him. My son needs to be able to protect himself to some degree.

So I force myself to stay put behind the steering wheel.

 Less than a minute later, my son ambles out of Wawa. It’s 8 minutes after I pulled up to the gas pump. A red, reusable shopping bag is swinging from his left hand. In his other hand, he holds a cardboard cup holder with a soda and an iced coffee.

“Hey Mom! I got you a coffee.”

The breath I didn’t know I was holding lets go and my whole body relaxes. My son slides into the passenger seat of the car. He fastens his seatbelt, completely unaware – I hope – that I was even worried.

Of course JR was okay. More than. I shouldn’t have worried.

I will – I always will – anyway.

Posted in Autism, Learning Disabilities, Motherhood, Special Education

The perseverating spectrum of guilt

Posted on by cmfalato

It doesn’t matter how many times I tell my son he didn’t fail, he still thinks he did

My son calls me up from college during his lunch break and asks a question he’s been asking since he was 16:

“Did I get kicked out of my high school?”

I sigh and try to contain the anger that surfaces each time he asks this question. I’m not angry with him.

I am not even angry with the high school assistant principal, the case manager, and the classroom teacher who failed him.

NOT because they didn’t follow the IEP. Not because they took advantage of my soft-spoken ex-husband, the Joey’s residential custodian and in-state parent to avoid having to do so.

Not even because they took advantage of Joey’s definitely NOT soft-spoken advocate and co-legal custodian, living out-of-state, to move slowly.

I know the missteps leading to my son having a series of catastrophic meltdowns and finally having to leave the high school were not 100% their fault.

Some of it was my fault for not actually reading and understanding the IEP. Some of it was my ex-husband’s for not realizing, because things were fine at home, there was a problem.

Hillary was right, it takes a village to raise an autistic, learning-disabled child.

No, what I’m angry about is that my son keeps apologizing for this. JR thinks he failed the high school.

Autistic individuals – in my experience – never get over their own perceived failures. They – we – keep coming back to them, no matter how much time has passed.

…and those failures still hurt. It doesn’t matter how much time has passed. We keep coming back to those moments. We can’t escape the pit-of-our stomachs guilt of our real or perceived mistakes.

Each time my son brings up “getting kicked out of high school,” I explain how that was not what happened.

You didn’t fail, JR. I pulled you out of the high school because I wasn’t happy with them (I wasn’t).

Your dad and I wanted you to go to a better school (we did).

The high school wasn’t giving you what you needed (they weren’t).

I didn’t finish high school, either (I graduated 6 weeks early).

JR, you didn’t fail. The school failed you (they did).

JR, you are a good person (he is).

JR, you didn’t do anything wrong. You know if you did, I would tell you (that’s true. I don’t mince words with my kid).

I say these things every time he asks, and, 9 years, a high school diploma and 3 college acceptances later, he still does.

JR is thriving now. I tell him so all the time. Every time I speak to one of his teachers, coaches, caregivers, I let him know what they said. I highlight his accomplishments.

Your coach says you’re bench pressing 95lbs! That’s amazing (it is).

Your nutritionist said you lost 5 pounds! You’re beating your stepdad (he is).

I got your report card. You’re getting straight As in all your classes. Brilliant. (also true. I’m jealous)

Your Group Home manager said you cleaned your room without being reminded. That’s great! (and a rare phenomenon)

JR, your dad and I are very proud of you (we are).

JR, you are smart, kind, and any time you set a goal for yourself, you achieve it (he does).

You are the only person [our anxiety reactive boxer] Rocky doesn’t react to (100% true).

Still, that one moment 9 years ago, this one time he thinks he failed, still haunts him.

I understand why it does. I do the exact same thing.

I wish it didn’t. I wish I could make the assistant principal tell JR what happened wasn’t his fault. I wish I had insisted the case manager talk with him about what happened when it happened.

I want my son understand we: the school, my ex, me, failed him, not the other way around.

It finally took us hiring a special education attorney and advocate to fix everything we got wrong.

I learned a lot about IEPs, IDEA, and FAPE that year. It’s served me well.

JR was placed out-of-district at a special education school. In the right environment, with the IEP being followed, and all of the services he was entitled to and needed being provided (documented on that IEP), the catastrophic in-school meltdowns stopped.

In 2021, JR moved to group home, and a special education high school, where he continued to succeed.

None of that matters to him, though.

I think I’ll go call his father and ask him to talk to JR. Sometimes hearing it from dad helps.

Does your child perseverate on their failures? Do you have a way of reassuring them of their success? Drop a note in the comments and tell us about it.

Cheers,

Cris