PROM NIGHT

Dear Persons,

A few weeks ago, I really messed up.

I’m on my own with my kids all weekend every weekend and sometimes I get impatient or overwhelmed. 

Often, though, we have a really great time together.

Because I’ve always been a solo weekend parent, my children have been forced to accompany me to concerts, museums, and so on. And I’ve watched more kids’ movies than I could count, some of them actually pretty good. 

On this particular Saturday, my son, G, who is a junior in high school, was really getting on my nerves with a couple of exaggerated teenage slob behaviors that are not developmentally typical for an older teen. 

It’s not that the things he does actually bother me per se, it’s that I worry he will do those things out in the wider world—and get shunned for doing so. Or made fun of, or dismissed in ways he won’t even be aware of…

I was having a stressful work day, too (I edit a Sunday political mailing on Saturdays, but I also freelance and, when things are going well, often work weekends). 

But mostly it was just the relentlessness of G’s socially unacceptable behavior that was sending me back to the days when I worried if he’d ever function at all in “the real world.”

So I wasn’t at my best. 

Meanwhile, we were all looking forward to going to a big action movie that night.

Around 5 o’clock, I told G that we had one hour left before we’d have to leave for the movie. I asked him if he could stop being offensive for that period—and warned him that he would not be invited to the movie if he could not. 

As we were putting our shoes on, G was unable to contain himself from doing exactly what I’d asked him not to do.

And I lost it. Visions of his future as an outcast (never mind that he’s the sweetest guy ever) flashed before my eyes as I berated him and sent him to his room.

Now what was I going to do? After all, I don’t usually leave him home alone, and my daughter was dying to go to the film. 

I sat down on the couch with my head bowed.

I tried to breathe deeply while I debated between consistency/follow-through and wanting to get a break/have some dang fun.

I wish this was where I’d come up with a great solution.

But it was time to leave!

Without much clarity, I yelled up to him, “Okay, come on down. I’m not happy about this but Z [daugher] and I really want to go to the movie.”

“I want you to know I’m still REALLY upset with you,” I added. “You only had to keep it together for ONE HOUR! And you couldn’t. So don’t talk to me right now!”

We drove into town in silence, parked, and began to walk to the theater. 

As we approached Main Street, we began to see teenagers in formal dress.

“Hi [G],” some called out to him. 

It was Junior-Senior Prom Night.

My heart sank.

For weeks, G had been trying to get someone to go to prom with him. He’d asked every girl he knew and even posted a request for a date on Instagram. 

A week before, he’d finally given up. And I’d forgotten. But I’m sure he hadn’t. 

In fact all day, as he’d acted out, he was probably thinking about prom and wishing he was going. 

So, yeah—my heart sank.(Yes, I know my heart “breaks” and “sinks” quite a lot. It’s just like that more often when your child  has special needs. Yes, I do know what I’m talking about, as I also have a neurotypical child. My daughter also has special needs—having developed an attachment disorder before she was adopted—but she will have a much easier time being accepted, achieving success, and getting what she wants out of people and life in general. So my heart simply doesn’t break so much with her.) 

Why couldn’t I have been more understanding, more compassionate? Presumed competence on his part and given him the basic respect of assuming he has his own reasons and concerns? 

Why did I focus on a superficial thing when my son's heart is huge—and vulnerable? 

Are there other lessons here for me here about raising an extraordinary child? About supporting rather pushing him than through his challenges? 

In any case, I’ll think twice about making assumptions. And losing my temper.  

Love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

You are invited to the Inlinkz link party!

Click here to enter

CONGRATULATIONS/MY HEART JUST BROKE

Dear Persons,

I'm trapped in the kitchen with two beloved friends who are having a conversation that is killing me. Their concerns — top colleges, will they have to pay full tuition or get merit-based scholarships — are so far from mine. And my heart is breaking.

I’m at an intramural basketball game and the people behind me are discussing their kids’ SAT scores. And my heart is breaking. 

I could go on. And on. 

It’s been a struggle to write this post, because I don’t want people to feel nervous about talking to me, and I would NEVER want my son to feel he was a problem or burden or less-than in any way. 

So let’s get a few things clear:

1. I am happy for you and your child, truly I am.
2. I WANT you to talk to me and around me, freely.
3. I understand I am responsible for my own feelings.
4. I’m extremely, EXTREMELY proud of my kid, who is wonderful and perfect, exactly as he is.

But, as much as all individuals and families have their issues, life raising a child with special needs and/or having special needs in a “normal”/neurotypical world is just not the same as it is for neurotypical/typically abled individuals and families. And it needs to be okay to talk about that — to normalize those feelings and share ways to help ourselves and our kids move toward achievement and success, however we/they define those things.

So I share this heartbreak here — where people with differences and extraordinary challenges, along with their parents and loved ones, gather in community.

Most kids my son’s age are now going to parties, dating, driving, working, doing average or above average or spectacularly on the SATs/ACTs, going to college or about to, even thinking (at least somewhat realistically and practically) about careers. 

While kids on the spectrum usually complete high school, that accomplishment often entails the extended timeframe and/or extra supervision/accommodations/modifications specified by an IEP. 

At the same time — for both parents and kids — it’s somewhat easy through these school years to act as if many differences weren’t really impacting our lives. Everyone has the same schedule, and the same projected schedule, year wise, more or less.

But fewer than 20 percent of adults on the spectrum complete college.

And only 14 percent of adults on the spectrum are employed. 

So much has been written by parents, researchers, and allies about the period of diagnosis. How parents often need to give up their basic, original, often unconscious/taken-for-granted (that is, until brought into question when differences and challenges arise) dreams for their child. And then, how to cope with all that: Ideally, we adjust those dreams, replacing them with new ones.

There's less information out there about how your CHILD can face the potential loss of his/her/their dreams, or how to do so yourself when it’s your own life dreams that may be extremely difficult to attain (or impossible). 

It’s hard to find insights about how people transitioning to adulthood can achieve their basic goals and dreams in the face of extraordinary obstacles, most of which stem from a larger culture that does not necessarily support — never mind celebrate — people who may do things a bit differently. 

And there are a lot fewer resources in general available for adults.

In G’s particular situation, he’s already facing obstacles. Sure, lots of kids won’t get into Cornell, even with lots of hard work. And maybe there are other kids who want to be ornithologists and will have to try extra hard to get there. 

But for him, even dreaming of college is huge — and it will require many, many intricate factors to be wedged into place to even begin the process of moving toward his goals. 

Will his heart break, even a little, as he inevitably confronts his unique challenges?

Maybe less than mine does: He’s been understood, accepted, usefully diagnosed, supported, celebrated in his neurodiversity in ways that my generation largely was not. He’s whole, self-aware, untraumatized.  

We all have our heartbreaks. Just the other day, I thoughtlessly told a childless friend who has struggled with infertility that I couldn’t meet her because of something that came up with my kids. I winced: I could tell I’d thoughtlessly hurt her heart. And I was unsure of what to say or do. 

You know what? I bet that’s how people sometimes feel around me. Or you. 

So I tried to say something loving, understanding, and supportive. 

I guess that’s what G and I would probably like as well; but people are often clueless about this stuff.

So we deal as best we can. Extricating ourselves from some conversations, initiating others (as I am doing here). Being genuinely celebratory of others' success while refusing to let unfair barriers keep us down. Doing the work we need to do to heal, grow, and succeed. Persevering. 

And I’m hoping that when my heart is breaking (which feels frequent nowadays) it’s also cracking open, getting bigger — and thereby creating space for more compassion/wisdom/generosity, more faith in my child, more commitment to my advocacy work. 

As Leonard Cohen said, “There is a crack in everything / That’s how the light gets in.”

In the bigger picture though, the vicissitudes of my heart take a distant second place to  the importance of this amazing neurodiverse young person finding his way in the world. 

Just as I adjusted and grew far beyond my original ideas about my child’s life, I hope he will dream big. And if he ever has to give up one dream, I hope he will replace it with a bigger, better one, one that mitigates any heartbreak. I hope he dares to imagine a world made fundamentally more whole by his contributions…

I wish the same for all of you and yours. 

Love,

Full Spectrum Mama

 Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

An InLinkz Link-up