Tuesday, November 13, 2018

"I AM VERY FRIENDLY"

Vocational Rehabilitation is a federal-state program that helps people with differences/disabilities overcome barriers to employment, gain work skills, find jobs, and build careers.

Our local Voc Rehab office recently started a program called “Linking Learning to Careers,” which works with differently abled high schoolers to develop job skills and connect school work with work-work.

When G was filling out his application, he had to answer some questions about his skills and future plans. 

One question was “What strengths do you bring to school, work, and your future career?”  

G wrote, “I am very friendly.” 


Figure I — “I am very friendly.”

My heart sank a little. “Honey, that’s not…” — I looked at his little [huge baby man] face — “Never mind.” 

I almost began to spiral on that one, but I didn’t say anything. I want him to feel confident and value his own strengths, even if they might be seen as somewhat irrelevant by his mom  or completely useless by a future employer.

G and I had been participating in fundraising efforts for a school trip he wants to go on; and I’d been working on a calendar raffle handout that the kids could use to sell tickets. The day after G completed the Linking Learning to Careers application, I finished the calendar handout and students began to sell raffle tickets. 

That very day, G went out and sold all of his raffle tickets within an hour.

In the end, he exponentially outsold every other student in the group.


Figure II — Friendliness + Initiative = Success

Here’s how he explained it to me: “Mom, I’m on the spectrum, so I don’t know when to stop. I just keep asking!”

A few days later, G and the other runners received their participation awards at the end-of-season track banquet. The coach spoke a bit about each student. When it came to G, he said, “When we go to meets, [G] knows more people than the entire team combined.” 

There you go, I thought, there are those skills of friendliness he brings to school, work, and his future career

G really, really wanted to go on that trip — and he made it happen. Heck, he wanted friends — and now he is friendly with hundreds of people. 

Sure, there are things I wish he would make an effort with that he doesn’t yet grasp the importance of, but when it really came down to it, G’s motivation and initiative helped him use his skill of friendliness to be truly successful. 

I hope that will continue to be true as he builds independence.

Our children (and selves!) with differences have amazing, sometimes-hidden or non-obvious gifts. These gifts become operationalizable — and that’s just sociologist-talk for making dreams come true — when fueled by real needs and wants.

This experience showed me we can all achieve success if both the success itself and the means of achieving it are meaningful to us and allow us to implement our unique skills. 

That might sound kind of basic, but it was a revelation to me. 

And it’s changed the questions I’m asking G as he moves out into the world. 

Instead of trying to ask questions that instill a “realistic” worldview and attitude — such as “Do you realize people how many hours you would have to work to buy those Magic the Gathering cards?” —  I’m wondering:

What are you passionate about? 
What do you truly want? 
What do you need for health and happiness? 
What unique skills do you bring to the table? 
AND
How can you connect all of these to live your best life? 

But honestly? I think G was way ahead of me on this. I was basing my approach on fear; while he bases his on hope. 

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!


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…




 
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!


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. 





 
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, 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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me 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!