Tuesday, July 9, 2019

NOT A DISEASE




As a family of vegetarians, we’re always on the lookout for veg-friendly places to eat when we go on the road. We recently ended up at a gluten-free establishment in the Midwest. Pretty good food! But I won’t mention the name because I did a bit of stealth activism there and I don’t want to make any assumptions about the owner or staff or clientele… 

You could get your own water and bus your dishes etc. toward the back of the restaurant, as well as use the bathroom. And there was also a help-yourself bookshelf full of stuff to read back there. I am always down for a good read, so I took a look. 

Well, the books consisted almost entirely of books about autism. But not just any books. 
“Cure Autism With This,”  “Cure Autism With That,” “Get Rid of Autism With The ___ Diet”—you get the idea.   

I felt ambushed—and horrified. I’ve spent all my parenting years trying to get my kids to love themselves as they are. Sure, I’ve read my share of books about the various nuances of our lives, such as adoption, autism, racism, neurodiversity, learning differences, behavioral differences, trauma, etc. 

And hey, yay healing! We all have stuff to heal. 

Heal away! If, in fact, it’s something that needs to be and can be healed. 

But I’ve always operated in a context of acceptance and diverse perspectives. This felt like a full-on, unilateral assault on being autistic—however well-meaning. 

I quietly went back to my table, took out my mini travel notebook and began to write. Then I went back to those shelves and placed a note in each book: “Autism is a neurology not a disease.” 

And on the long drive home from our trip, I thought about the ways our culture pathologizes so many things that might better be treated as normal and healthy aspects of the human condition. 

Being shy? A serious condition. Same-sex love and desire: a psychological disease? Until shockingly recently, the majority of people, including some scientists and doctors, thought so. Cellulite: abnormal but “curable” (hah!).  Are you little bit weird? That’s weird. Maybe kind of…spectrum-y? Better treat it. 

We even treat getting older like a disease. In fact, I’m embarrassed to admit (even to myself) how much of my internal dialog consists of self-criticism over my age spots or crepey skin. How ashamed I feel on a very gut level about aging, despite being a feminist and never, ever ageist with others. 

Um…HUH? What’s the alternative

When will we wake up to the full range of beauty?

Thanks and 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!
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Tuesday, June 11, 2019

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 hugeand 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!

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Click here to enter

Tuesday, May 14, 2019

WHAT'S THE BEST KIND OF PARENT?




Over the years, I’ve mostly thought it’s been an advantage for my son to have a neurodiverse mom. But the other day, as I bumbled about, I for some reason was hyperaware of how much there is I don’t get, whether because it’s implicit, or because I see things in a black and white way…

Some things I see as unilaterally wrong (it’s hard to give a neutral-ish example without offending anyone), including stuff most people see as excusable under certain circumstances (lying) or even “normal” (eating meat). I don’t actually judge others regarding these things—see below about my self-perception as nowhere near that entitled—it’s just how I myself think and live. 

Other subtleties and social niceties (and meanities!!!!) have only become obvious to me in my forties. 

It wasn't until, oh, about five years ago, that I realized some people have other priorities in their logic besides kindness. 

And I’m so literal that I didn’t even understand that being literal was a thing. 

For a REALLY LONG TIME.

Another thing I’m finally realizing is that there are a lot of things I may not have understood along the way. 

I knew from a very age that there was something different about me and my brain. To be more blunt, I “knew” there was “something wrong with me.” (This was unfortunately an impression that was initially created and then reinforced by those around me. It was, in some ways, a very different era.)

So I developed a lot of coping and passing (as “normal”) mechanisms. As an adult, I definitely pass as “getting” more than I get, and as (I hate this term, because it SO CLEARLY is a neurotypical one!) “high functioning.”

Still, how many people have thought I was a total wack job? How many times have I missed the deeper point of what someone was saying? 

I know I’ve taken people’s words as unkind or marginalizing when they weren’t meant that way. By the same token, I’ve sometimes hung around people who didn’t want me around for way too long, or accepted cruel behavior (toward me) on the basis of my own self-determined inability to “understand what’s really going on.” 

I guess I’m becoming aware that, for my son, having a mom who he can relate to and who understands his neurology definitely has its strong points. But it’s also probably hard for him that I'm “weird” or hurt or confused or clueless a lot of the time. 

Also, he thinks I’m a total loser, so he’s not always pleased to hear about our similarities. 

But there’s more. I found out I’m a Hufflepuff! [Non-Harry Potter fans might want to skip to the next paragraph.] All these years, I was cluelessly convinced I was a Ravenclaw/Gryffindor. In retrospect, I realize I was avoiding taking the sorting test because I was afraid it would reveal I was neither as clever (Ravenclaw) nor as brave (Gryffindor) as I held myself to be. Nope, I’m not. I’m a jolly, kindly, well-meaning, bumbling Hufflepuff. 

So I got to wondering whether it might have been better for my son to have a parent who was more, um, with it. Someone who could better play by the (unspoken) rules and sort of…finesse things in a way that I, in my bull-in-a-china-shop way, cannot. 

How often do I fail him because of my own neurodiversity and cluelessness? Would the best parent for him be someone who’s more savvy? Someone who’s more “successful” by real-world standards (which would include financially)? 

Wouldn’t it be great if he had a mother who understood how to teach him to really be successful—in real-world terms, taking effective, reality-savvy steps—instead of a literal-bumbling-weirdo-Hufflepuff?  

At the same time, I do know I love him exactly as he is and fight for him with all I’ve got. 

And I’m all he’s got, mom wise.

I realize this is a false dichotomy in some ways. Plus, I'm not really addressing the many other parental concerns and diverse ways of parenting, not to mention parental situations, from marital status to economic status, ethnicity to gender identity...

But it still sometimes feels like there's this overarching and fundamental split between those who share differences and those who do not, one I continue to work to mitigate however I can (in our particular area of difference as well as others). 

I imagine parents and loved ones who don’t “get” autism can probably relate from the other direction. Maybe they might not directly, personally understand why someone who’s neurodiverse can’t just “act like other people” or doesn’t perceive the world as they do. 

But they “get” that world—and can navigate it way better than most of us with differences. So they can help their children or loved ones with differences figure out how to get by in a world that’s not designed for them. 

I finally figured out that, in this context, good parenting is about being open to learning and growing, being curious, being accepting. To bring all that together, trying to understand is probably what makes the best parent—along with love, of course. 

So I guess whether you’re a little (or a lot) different and trying to understand people and institutions, or you totally get all that stuff but are trying to understand your kid, or anywhere along that spectrum—you’re good! 

Especially if you’re a Hufflepuff.

Just joshing. EVERYONE who’s lovingly trying to understand wins.  

Love,
Full Spectrum Mama


P.S. If you have a minute, consider answering some questions for a student at Drexel University who is working on a project about how much time parents of children on the spectrum spend on paperwork. Find her survey here. (I am in no way affiliated with this, but was asked to spread the word. Drexel actually has an apparently awesome program for college kids on the spectrum, BTW.)

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!


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Tuesday, March 12, 2019

ADVOCACY FOR YOUR CHILD’S TRANSITION TO ADULTHOOD


I used to be funnier. I began this blog a few years after my son was diagnosed, when I’d begun to see the positives in neurodiversity and learned to navigate the school system a bit. 
I had the mental and emotional space, as well as the knowledge, to bust out my sense of humor, mostly when laughing at myself or the many ridiculous aspects of bureaucracy. I sometimes even found it in me to take certain aspects of ignorance and some of our challenges a little more lightly. 

I’ve said this here a few times, but I’ll say it again: For me, this transition-to-adulthood phase is the most terrifying part of our journey so far. 

When my son was a child, I could shelter him, protect him; now he’s headed out into a world that isn’t always suited to those with different ways of thinking and being, never mind people with tender hearts. 


And I haven’t found the funny in it yet. Basically, I’m back here, like, all the time. 


Figure I — My Overactive Extrapolator–Catastrophizer Gland

Still, I want to offer this community some really important information that should have been way easier for me to figure out…but was not. 

Between the harried high school case managers and the various overloaded  agencies, not to mention the lack of communication among all these institutions, there was so much I just didn’t know.

Fellow parents were really my lifesavers here, and I was fortunate to find a few real parent “experts” along the way who laid things out for me in a lifesaving way. If you don’t have anybody like that, this information might be very valuable; and even if you do, there may be supplemental aspects. 

This list is necessarily incomplete, and I plan to write more about this huge topic as I learn more. For now, here’s what I know — hope it’s helpful. Questions welcome (as comments or PMs):

1. Designated Agencies
These are organizations selected by the state to manage certain aspects of public health. If it deems you or your child eligible for its programs (in our case, Adult Developmental Services), your local designated agency will guide you through the process of figuring out what is available to best suit your situation. 

Above all, this agency will help apply for and then administer your or your child’s State Medicaid Waiver. 

Sometimes the language is a bit different (“service agency”), but you can pretty much google your state, “disability," and “designated agency,” now that you know what a designated agency IS (I had no idea for way, way too long). 

2. State Medicaid Waiver
The State Medicaid Waiver provides funds for key services, such as a supported apartment, and help with educational, personal, and employment matters. 

When your case manager at your designated agency initiates the waiver process, they’ll create budget lines for housing, employment, and other kinds of assistance, such as education (including aspects of supported college programs).  

3. Vocational Rehabilitation
Vocational Rehabilitation is a federal-state program that promotes employment readiness for a wide array of people facing challenges, especially people with disabilities. It also helps them find and retain jobs.

Voc Rehab can apparently provide expert help with applying for SSI (see below), too. 

4. Supplemental Security Income
Supplemental security income, or SSI, is a federally determined and dispensed monthly sum that is meant to cover the expenses of people with certain medical issues, disabilities and mental health challenges.

You can apply for SSI 30 days before the age of 18, and need to call a month before that to set up your appointment. The application leans toward medical disabilities, so work with Voc Rehab to optimize your or your child’s application 

5. College Support Programs
There are many programs offered by colleges themselves and others — private and state-run — offering group living and academic support. A lot of these options are super expensive; some even add support costs on top of college costs to the tune of so.much.money. 

If financing higher education, never mind additional supports, is a concern for you or your family, investigate state-run college programs for people with disabilities — some are free or close to it!

6. Guardianship And Independence
Independence exists on a continuum. People with developmental differences may benefit from scaffolding at the outset of — or throughout — their adulthood journeys. Options here range from limited assistance with money management (known as a “representative payee”) to various forms of limited guardianship to full guardianship.

Because I’ve vowed to presume competence, I’m trying to prepare myself to face potentially devastating choices involving risk, respect, trust and safety in this arena. But at least I’m educating myself and my son about our options.  

7. Able Now Account
This type of bank account allows you or your child to deposit funds that will not count against you/them in determining eligibility for various benefits, such as EBT, Medicaid, SSI, and the State Medicaid Waiver. 


It’s still early days here, so we haven’t navigated all of these processes (and I know there are more things to figure out: I’m looking at you, health insurance). I'm not even sure which will be appropriate — I’m just glad to know they exist. 

And now so do you. Good luck!!

Thanks and 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!


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