Tuesday, September 11, 2018

BOBBY



Dear Persons,

I know Bobby because my brother-in-law used to do respite care with him. 

He often brought him to brunch at our house on Sundays. Bobby was eternally grateful for the food I cooked. He would play with my son, games most kids his age would have scoffed at. 

Bobby would hug us so tight when he left.  He had a sweet side for sure.

Bobby’s not his real name.

Bobby must be in his early twenties by now.

He’s sitting on his front porch most days when I drive by on my way to town. 

He’s trying to quit smoking.

He’s gaining weight.

Sometimes I see him in town with a “helper.” I say “Hi” and check in on whether he’s quit smoking yet.

I never see him with anyone else.

My daughter—when she sees me tear up when we drive past him—says, “Mom, that’s not going to happen to [G], he has you and he has me and you’re a good mom.”

Bobby’s mom is probably a good mom too. (Or his parent/guardian[s] is [are] good, in their own way[s].)



Do any parents not love their kids and want the best for them?

Is every life not a worthwhile life?

What can young adults DO in this small town with few young people and fewer opportunities?…And if they are on the spectrum? 

Bobby’s on the spectrum.

Even in bigger cities, with more opportunities, more diversity—are human beings with differences getting lost in the mix? I’m betting they are.

What are the components of a decent life? From my perspective, they would include community (however that is defined, in a way that makes sense for each individual), meaningful work or some sort of activity that contributes, health, the freedom and opportunity to pursue one’s interests and goals.

From my perspective, Bobby’s life seems terribly lonely and sad. 

But it’s unfair to make assumptions about someone else’s life.  And maybe he wouldn’t agree.

I think he deserves better.

Maybe he wouldn’t agree. There are certainly many things I don’t know about Bobby’s life.

I do know that I don’t want a life like his for my son.

Maybe my son wouldn’t agree.



Soon, the time will come for that conversation. I will help him in any way I can to make his dreams come true, but at a certain point* he will become more and more—or even entirely—responsible for his own life. 

I hope he’s seen and understood enough of the world by then to make healthy, positive, proactive choices, both in terms of how he wants to live and as far as what he needs to do to live that life.

Love,
Full Spectrum Mama


* When will that be, dear fellow parents of children with differences? A tough question, with as many answers as there are children…




 
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Tuesday, July 10, 2018

99 Problems





I can’t be the only person who sometimes feels the world is a minefield for anyone who is not a white, middle class or above, straight, neurotypical, cisgender, male, typically abled person with a resolved and “good” citizenship status.

Or maybe I am just an oversensitive rabble rouser. 


In any case, when I got this "special" handout after a medical appointment for my son:



...I felt aaaaaaalllllll the feelings. 

It’s hard to even respond effectively or “unemotionally” to these things that blindside you when you are just trying to get your kid’s toe looked at. (Or read a book, or go to a grocery store…I mean, you know what I mean: Unfortunately, discrimination and ignorance can pop up just about anywhere.) 

Here’s what I sent to the whole office, including individual doctors:


Dear [Medical Professional/Office],

Please see the attached partial shot of [G]’s handout (from a visit for an infected toe) from last week. 

While there is much that I could say about this — whether from a moral, legal, ethical, neurological, medical, and/or personal perspective — I will limit myself to this:
Imagine how you would feel as a human being (never mind as a CHILD) to see your way of being (the way you were born) casually maligned as a “problem” on a random medical take-home handout. 

While an individual’s spectrum status may arguably be relevant in some medical situations, an ingrown toenail is probably not one of them. In addition, your terminology is outdated. And your framing of this neurological difference — which in fact also brings many gifts — as a “problem” is quite simply cruel. 

Knowing your office and Dr. ____ (clearly a caring person), I have to assume this is an oversight. I ask on behalf of my family and all others with differences that you stop this practice and any others that may marginalize or denigrate your patients, however unintentionally.

Sincerely,
[Full Spectrum Mama], Ph.D. 




The Full Spectrums do have 99 problems (if you get my slightly inappropriate reference) — probably more like 999 — but “Asperger’s disorder” is not one. 

Love,
Full Spectrum Mama


Update: The doctor called and left a message apologizing and claiming oversight. I called back and left her a message saying I trust nothing like this will happen again to anyone in her office.

Le sigh. 





 
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Tuesday, June 12, 2018

HAVING IT BOTH WAYS

Dear Persons,

I had an argument with myself yesterday.

I was thinking about this whole process I'm beginning for setting up G's future.

How I want him to have all the support he needs. And all the respect.

If you’re reading this, you probably have your reasons for doing so — and you probably understand some of the paradoxes of living with difference.

But yesterday my critical self — representing both a certain logic AND people who just don’t get it — accused me of trying to have it both ways.

I want G to have a safety net and scaffolding that will help him stay healthy and on point with his studies and/or work. That means federal, state, local, community, and family resources. And it means I will advocate and fight for these resources…

I will do so even as I believe in his capacities to thrive, succeed on his own terms, and even excel on a  wider scale — and will also advocate and fight for his equality on every level. 

He’s autistic and he’s brilliant. Partly, he’s brilliant because he’s autistic. Yes, without pressure he might never clean his room or his body again; yes, I hope someday that won’t be the case. But do you need to know anything — anything at all —  about birds, Pokemon, ‘90s punk funk, or Magic the Gathering? 

He doesn’t self-regulate vis-a-vis screen, sleep, food, etc. and he doesn’t self-regulate being friendly, loving, corny, and generous. For the foreseeable future, he will continue to need sensitive and wise supervision in a lot of the basics. But do you need a hug, a smile, a laugh, someone to look at you with eyes and heart utterly devoid of judgment? 

Think of all the ways people without extraordinary differences are helped out by other individuals and institutions, from federal poverty programs to local business initiatives, from recovery groups to the uptick in adult children living at home. We all need help! 

But being different is complicated. The types of public and private assistance that are commonly available are often predicated on being unable to do things that people “should” be able to do. Well, I’d like to note (not for the first or last time) that our G — like so many of his fellow “non-typical” people — can do a lot of things that not just anyone could.

Because society is the way it is (have you heard of the social model of disability?), he will need and deserve plenty of support and scaffolding if we are going to find out what he is truly capable of. At the same time, he will need and deserve a lot of respect and encouragement. All of these needs are valid and worthy because he's a disabled/differently-abled person, a twice-exceptional individual…a complex, complete human being.


Figure I - Valued Contributing Member of Society 




Figure II - Person Whose Needs are Valid and Worthy 


My hope is that G can be sustained by his environment in such a way that he can use his unique skills to become a valued contributing member of society. If that’s having it both ways, so be it.

Love,
Full Spectrum Mama






 
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Tuesday, May 8, 2018

GOODBYE, NAMEY OLD NAME THE NAME

Dear Persons,
There’s something I’ve been struggling with for some time now.

To make it less loaded as a puzzle, let me start with a lighthearted example. Let’s say there’s this thing we call a chipmunk. We use that name to refer to a particular type of creature, a small, orange-y, striped, cute one; and to distinguish it from the larger, less-cute (to some), similar-but-usually-grey animal we call the squirrel, not to mention any number of other rodents and animals. It’s useful to have a shared name for this distinct creature. And we may even have other names for individual chipmunks, such as “Little Jerk,”  and “Garden *&%#$.” But we always know what chipmunks are — and what they are not

But what if we found out that the very word chipmunk was problematic? What if chipmunk was another name for, Oh, I don’t know, a possible Nazi-sympathizer

Besides it being a commonly-understood term — and an erstwhile diagnosis/label (one no longer widely accepted in the professional/medical/neurological sphere) — why do we use the word Asperger? I had to take a hard look at my own usage and I realized that — although I do avoid the term “high functioning autism” (or HFA), because I think it has questionable implications and is implicitly comparative of human beings — I have typically used Asperger somewhat in the same way. That is, I have unconsciously used this term to make it clear that my son is the kind of autistic person who has special interests and above-average intelligence, etc. That was wrong of me — as continuing to use this term would be. 

At the same time, I also used the term to describe him because the general usage/understanding of this term really fits G as he is: highly verbal, quirky, not so great with social cues…But that’s not going to fly anymore. 

Autistic and on the autism spectrum seem fine to me, but a little too defining/labeling for day-to-day use (I do not like autism spectrum disorder as I do not frame different brains as inherently disordered!). From now on, I am going to use the term neurodiverse. Yes, it’s slightly meaningless (a la “tasty” — oooh, it has a taste!), but it neither refers to a kind of human being by the name of a criminal nor distinguishes between neurotypically devised “levels” of “functioning.”


Thanks and love,
Full Spectrum Mama


P.S. I completely understand and honor those individuals and organizations who’ve chosen to stay with this name, or who chose it prior to knowing about the complex history behind it. This is my choice, for myself. 


 
Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny 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!


Tuesday, April 17, 2018

MIDDLE SCHOOL ORIENTATION -- THEN AND NOW

Dear Persons,


We remember our most terrifying life experiences all too well, right? 

My first Middle School Orientation as a parent was one such moment for me. 

My son, “G,” is now 16. He is a super smart, autistic, kindhearted 10th grader. 

My daughter, “Z,” is 12. She is allistic, very, very clever, and has some residual attachment-disordered behavioral traits that actually serve her well in her brutal 6th grade milieu. 

Four years ago, I attended G’s Middle School orientation. This spring, I attended Z’s. The differences between the two experiences were remarkable: 

Then: Abject terror for my child.
Now: Mild concern for other kids since, how shall I say this, Z and her friends are “still developing this skill” of the skill of empathy. 

Then: Both children sitting with me. I'm so tense that my little guy — not the most observant kid on earth — is sensing my alarm, and my little gal — showing her rare and dear soft side — is noticing the tears streaming down my face; trying to keep it together for them and for my own dignity, such as it was. 


Now: Sitting solo. G at another event. Z up on the balcony with her girl posse, all small but mighty. Scornful expressions masking…nervousness? Nah. 

Then: Tears.
Now: Yawns. Have already seen this presentation. Plus, not worried. 

Then: Curiosity tending toward fretting: Will these new teachers really see my child? Will he succeed here on his own terms? Will my child be bullied during this awkward time of life? Will G’s learning differences be scaffolded in such a way that his intelligence can shine? 
Now: Curiosity, pure and simple: What will those teachers I was in close contact with for G think when they meet Z? Will my child be actively kind to “different” kids like her brother? Will Z make an effort to do better if getting decent grades is easy for her? Will her developmentally appropriate “attitude” be toned down in class? In the lunchroom?

Then: All-out trepidation about the changes, from multiple classrooms to teacher-specific homework assignments.
Now: Relief, knowing I won’t have to intervene or oversee Z constantly—vis-à-vis homework or anything else. 

Then: Organizing Team Friendly Face.
Now: Admonishing (“Please try to look a bit less haughty — there are students here who feel intimidated and scared”).

Then: Praying.
Now: Sighing. 

My special “expertise” has always been around having two very different kids, but these four-years-apart experiences encapsulated that reality for me in the most striking way. It’s nice to see in this latest iteration that from time to time I am able to avoid having a total panic attack when a total panic attack is not warranted (I’ve wondered about that). 

Then: Despite all that, my kids are alright. More than alright! 
Now: Ditto!

Then and now, I am grateful for these two precious beings and for the ways we all persist in growing and trying, together. 

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 Jenny 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!