Posted in autism, parenting

On Autism: Assuming Legal Guardianship of My Son Instead of Attending His High School Graduation

For the last week or so I’ve been holed up at my favorite yoga studio, working out my frustration with and trying to figure out how I feel about signing off on my son’s Guardianship paperwork in a couple weeks. Leading Man #1 has Autism and Intellectual Disability on paper. He is unable to function independently. TheEx and I will assume legal guardianship on his 18th birthday and kiddo will become an “un-emancipated adult.”

So how do I feel? It’s gone in stages.

  • First, I got angry, really, really angry. Why did this happen? Why isn’t my son going to graduate in June like a typical teenager? Why does an  attorney have to explain to him in a formal setting that he’ll be under his dad and I’s care for the foreseeable future?
  • Next, I felt guilty. It had to be those peanut butter M&Ms I ate every day at lunch during my pregnancy! I gave up residential custody! I moved to Massachusetts when kiddo was 8!
  • Then I assessed blame. Mostly to the high school JR attended before he was placed out of district, to the school district in general, to the water quality in his hometown, to M&M Mars, to TheEx, and, of course, to myself.
  • After that, I got depressed, really, really depressed. On Facebook, my mom friends were posting senior prom and graduation photos and talking about which colleges their neurotypical kids got accepted to.

As happy as I was for my friends and their kids, seeing those posts sucked. Seriously, when did TheEx and I stop planning for college and start planning for a vocational job? When was the crucial moment where JR turned the corner from “With the proper supports he can…” to “He might not ever be able to”? I know I’ve been a long distance parent for the last decade, but I’m an active presence in my son’s life nonetheless. I wouldn’t have missed that pivot. 

Somewhere inside of me, through all of the specialists, the neurologists, the psychiatrists, the school social workers, and the wretched IEP meetings, telling me otherwise. I still believed we would never reach this moment. I honestly thought that if TheEx and I can just find the right doctor, the right Molotov cocktail of medications, the right …something, the frosted contact paper that seems to veil my son’s true potential from the world would be ripped away, and he would magically become high functioning. 

Assuming legal guardianship feels like I’m giving up.

“Seriously, when was the crucial moment my son turned the corner from “With the proper supports he can…” to “He might not ever be able to”?

I know better. I also know many autistics will scream at me and call me “Martyr Mom,” say I can’t accept my child as he is and my son is good enough as such. That’s not the problem. I love my son exactly as he is. I accept him. I know JR is good enough, because for me, there is no question he is “good enough.” Of course he is! He’s my son. Even during a meltdown, or, actually quite worse, the very neurotypical 100th blast of anime teen angst music from his bedroom, I wouldn’t change a thing.

My dilemma, and why I am holed up in a 100 degree yoga studio sweating out a downward facing dog trying to sort out my feelings, is this: JR is my child. I am supposed to take care of him. I am supposed to protect him. Somehow, by JR growing up atypical, it feels like I failed somehow…like I let my son down. Will JR hate me for assuming guardianship and taking his legal rights away? Will he hate me for not finding that “magic pill (therapy, etc.)” that would have prevented me from doing so?

Will Leading Man #1 ever know what, in the eyes of a neurotypical world, he “missed out on”? That’s a very valid question. The answer is as yet to be determined.

Did I fight hard enough to find that magic…whatever? Again, that’s a very valid question, and again, the answer is as yet to be determined. 

I know I shouldn’t mourn my son’s lost potential, but I do. Like most people, I am hardwired to believe in “normal” and to want “normal things” for my son. My son’s life is not normal. It never has been. That was okay until now…until senior year of high school…until TheEx and I were gently but firmly told guardianship had to happen.

In the end, I decide I feel horrid about having to sign that paperwork, about having to take legal guardian ship of my brilliant 18 year old. I let myself feel that way for one more downward facing dog, and then I let it go. Wallowing in the loss of what might have been won’t make what will be better. It’s also a waste of time. I have better things to do, like spend quality time with my son. 

I also think I’ll stay off Facebook until August.

Originally written Spring 2019.

Posted in autism, custody, distance parent, motherhood, non-custodial mom, non-residential parent, parenting

From The Archives: SupercalifragilisticDistance Mom!

Originally Published on Various Shades of Blonde Nonsense in December, 2012.

Mostly I consider myself a decent parent – for the role I have in my son’s life, which is by no means that which society considers a mom should have.

Or me.  Three years later, I really think I should be there in person more often.

Hey!  Hadn’t Roddenberry, Clarke and Kubrick promised us teleporter technology by now?  What gives scientific community?  Surely the demigods of classic sci fi could not have been wrong in there predictions.

Even worse – Lucas gave it to us a long time ago…

Moving on, since Toyotas are brilliant, but even they get cranky driving 500 miles round trip once a month.

One of the tics and quirks of Autism is perseveration.  An autistic person’s mind will get locked on a topic and stay there.  They will talk about the topic non-stop.

For the last few months Leading Man #1 has been perseverating about an internet video game (we’ll discuss how it is an “M” game he was not supposed to have access to and how he bypassed his father’s internet security protocols blocking the site later.  I’m not done groaning over that one sufficiently to type about it yet).

My ex installed new industrial content blocking software on J’s computer, but I decided something more needed to be done.  I asked that my son’s IEP (Individualized Education Plan) be modified to address the issue.  My concern was that once J. stopped perseverating about Randy’s Empire, he’d go on about something else.

One well tapped email and a call to the principal later, my ex, myself and Stepmom received an email from the behavioral specialist at the school outlining their plan to assist my son and modifying his IEP.

I know, I know, all in a day’s work for a custodial, in person parent, but I did this from 250 miles away, on a break from my full-time workday.

Parents, but NCPs especially, need to celebrate our little victories.  We need to give ourselves credit for how involved we stay in our children’s lives.  We know it is all in a day’s work for us, but others do not.

I, especially, am thrilled when I can successfully advocate to make my son’s life better, on the spectrum and off.

Ergo, supercalifragilisticdistancemom!

Posted in custody, distance parent, motherhood, non-custodial mom, non-residential parent, parenting

Time Stand Still

It’s 10:43 p.m. In just over 6 hours, I need to be up and rolling for a BNI meeting that will include a 45 second commercial featuring a typewriter.

Not a word processor. Not a laptop. Not an old IBM Selectric Electric typewriter.

An actual typewriter.

So the bottom line is I should be asleep, or at least trying to get some rest before a 14 hour day of proposal writing and freelance writing gets underway. Instead I am awake in the spare bedroom that functions as a library, sitting on a futon with a pile of books at my feet, contemplating a 30 year old (at least) Rush song.

My son and I pulled the books off the shelves yesterday with the intent of sorting them by author by the end of the week. Ever the English Teacher, I thought going through the hundred (conservative estimate) books in my collection might inspire my son to read. I am paying him $10 an hour for doing this: $2 more than NJ Minimum Wage and $2 less than Massachusetts Minimum Wage.

I was advised my son needed structure and a job even during his summer break, but also the books actually need to be sorted. Kurt Vonnegut is intermingled with John Updike, who is interspersed with Joyce Carol Oates. Various unread tomes by Janet Evanovich are in a conjumble with Jodi Picoult. Meanwhile, Neil Gaiman snuggles up to Liane Moriarty, and Jim Butcher rubs shoulders with Sophie Hannah. I honestly don’t know what I’ve read and what I haven’t anymore.

Getting back to Rush.

Time Stand Still, off the Hold Your Fire album, was omnipresent the 4 years I spent, between 1987 and 1991, at what was then William Paterson College in Wayne, New Jersey. At the center of campus was a student center with an arcade. The arcade had a large CD jukebox with equally loud speakers and perennially open doors. Every time I walked through the Student Center, Time Stand Still was blaring out of the arcade. I always seemed to be hit it right at the chorus:

Time stand still
I’m not looking back
But I want to look around me now
Time stands still
See more of the people
And the places that surround me now

Time stands still
Freeze this moment
A little bit longer
Make each sensation
A little bit stronger

I listened to those lyrics with idealistic, bittersweet young adult ears. I knew college was a short interlude between being a carefree teenager and an adult with responsibilities.

My son is the age I was the first time I heard that chorus, and shortly, he’ll be leaving his father’s house and moving to an out of home placement. For the next 2 weeks, though, he is mine. For 10 years I have dreamed of spending this time with him, where once again I am just Mom, juggling work with making dinner, assigning chores, admonishing him to step away from the X-Box and get at least 5 minutes of fresh air, hanging out with him, and occasionally administering discipline. Tonight, as we were watching Dr. Who (the newest Doctor) together, it hit me, how badly I want time to stand still.

This time, that I can feel slipping away, even as I take in and treasure every moment. I could have let college slip away without notice or regret. Time with my son I cannot. I will have 2 weeks at home with my son again. I just won’t have this 2 weeks, at this particular age and stage, with Leading Man #1 again.  Children grow up. Parents grow older. I never want to look back and wish I hadn’t tried to freeze, or at least fully appreciate, this moment, or any moment with my son, a little bit longer.

I want to shut down my office computer, shove these books at my feet back on the shelves, and cancel my appointments for the next 10 days. I want to see more of what surrounds me now

Time stand still.

I won’t do any of those things. I’ll keep working. I’ll keep my appointments. We’ll continue to work on the books.

Ok, maybe I’ll prune the books a bit – at least set up a library book sale donation box. There are far too many of these that I’ve already read, and with rare exception, I don’t red the same book twice. There are too many others I want to read.

First I’ll go check on kiddo again. For the last 45 minutes I’ve been savoring the sound of his snores coming from down the hallway.

That sounds creepy, but it’s really not. It’s a mom thing.