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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Tuesday, February 12, 2019

KOANS FOR PARENTING TEENS I-IV

Dear Persons,

The Oxford English Dictionary defines a KOAN as “a paradoxical anecdote or riddle, used in Zen Buddhism to demonstrate the inadequacy of logical reasoning and to provoke enlightenment.” 

When I am faced with questions I can’t answer, I often reframe them as koans, in order to — yeah, basically — make myself feel better.  Also, laugh. (Also, cry.) 



Teenagers provide ample opportunities for koan construction, let me tell you — never mind parenting teens with differences…

Here are some recent koans I’ve developed: 

I.
If your neurodiverse teen stays out late for the first time and then sleeps past their usual 5:30 am. wakeup…is that Self-Regulation?

II.
If micro side-eye is smaller and quicker than regular side-eye, can it still be worse?

III.
If a peer invites your developmentally different child to do drugs or vape…is that Good? Or Bad?

IV.
Why is being weird weird, but being mean isn’t weird? 



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!
Inlinkz Link Party

Tuesday, January 15, 2019

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. 



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!