Showing posts with label Fear. Show all posts
Showing posts with label Fear. Show all posts

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 12, 2017

HEY, YOU!

For Ozzie



Hey, you - you, who just got a label after years of searching for answers about yourself.

Hey, you - whose child or loved one just got a diagnosis.

Hey, you - who just gave birth to a child with a difference and/or disability.

Hey, you - who suddenly feel like it’s all too much, who don’t have it in you to cheerfully be different today. 

Are you spiraling? Of course you are. Do you feel like your life is being eclipsed? I’ll bet you do. 

Can you breathe? Just stop, take a moment - one moment! - and breathe. Between you and me and the fencepost, let’s face it: even one moment can be a lot to find what with all this diagnosis/labeling/disability/difference navigation business! But I am here to tell you that it is possible…Just the one. Try just that one moment of pausing to breathe.

(I was a Yoga teacher for a long time and one thing I learned was to teach only what you yourself practice. All that self-care stuff sounds great to me but…really? Who has the time and/or money? I know, though, that if I can find one moment to breathe you can too!)

Here’s the thing: there’s nothing wrong with you/your child/your loved one. It’s no one’s “fault.” Yes, the world wasn’t really designed for some of us - and there IS something wrong with people who discriminate, IMHO. But you (your child/loved one)? Perfectly imperfect just as you/he/she/they are. 

Sure, in time you/your child/loved one may benefit from certain interventions - whether medical (surgery, medication…), therapeutic (physical, psychiatric…), educational (IEP, tutoring…), etc. - but so much of that is designed to help us “fit in” to the world as it is, not necessarily as we are. No judgment!  Every individual and family must make their own choices! However, please never feel that these things “fix” you/your child/loved one; instead, they help us to function better in a certain, particular type of context

Here’s an example: students with ADHD can thrive without any medication or behavioral finagling in a variety of learning environments, many nature-based, but typically not including a standard classroom environment. Yet the standard classroom environment is what they usually encounter, which may lead to any number of challenges, including issues with self-esteem…

One of my best college friends and I were a tiny bit tipsy-ish one night and thought it would be really funny to call out to passersby with the hilarious words, “Hey, you with the internal organs!”  (Good come on, right?) 

This particular friend has had her challenges in her parenting journey, I can assure you, but her humor and accepting attitude have served her well.

Because hey, by the way, even if you DON’T have internal organs, those of us who have suffered for our differences and/or those of our loved ones tend to know and live true inclusion and thus we respect, accept, and honor you with no judgment regarding your internal organ status.

See, we’re all in this together - something I think those of us who’ve had to fight for our own inclusion or that of our loved ones realize early on. The fact that not all people see things this way is sad both for us and for those who don’t see this truth. 

So hey, you, you reading this post - either with your eyes or another organ, through being read to, or an assistive device - you are stronger than you know. And you are not alone. Wait till you meet some of these characters who get it, who’ve been there. 

Deep breath in, deep breath out...Welcome!

Love,
Full Spectrum Mama


P.S. The Bloggers in this Blog Hop might be a good place to start: 


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special nee
ds 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, November 8, 2016

WE ARE THE CHAMPIONS

Dear Persons,

The recent news of an autistic boy named Chase Coleman being assaulted during a cross country meet, essentially for being Black and autistic, broke my heart. G runs cross country, and although G is not Black or non-verbal I share many of the concerns this boy’s mother had, such as worrying about G getting lost during meets. G’s Sensory Processing Differences (SPD) and other challenges can make running cross country distances and trails a minefield for him, yet he keeps trying, usually with a smile. He also hasn’t digested some of the central customs of the sport, such as being at the starting line with his number pinned to his uniform (don’t ask). 

Like Chase’s mom, I attend all of G’s meets, because I am immensely proud of course - I am sure Chase’s mother believes her son is a real champ, as I do…But I also go to every meet because I want to keep an eye on things.…make sure everything goes okay.

My daughter, Z, also runs cross country in her elementary school. While I try to attend all of her meets as well, I don’t worry about her in the same ways - at all. East Asians (she is of Chinese ethnicity) are not stereotyped in the same ways that people of African descent are, so I don’t worry about her being targeted as a threat (though I do worry about her vulnerability, as most parents of daughters do…). She’s fast as heck and has a great sense of direction, so I don’t worry about her losing her way or her “performance” or confidence…

She’s celebrated on her team, where it sometimes seems my G is merely tolerated. 

You know…the Full Spectrum.

Back to Chase. I was having that feeling that some readers will find familiar where you suspect your child’s very real efforts are not being appreciated, so I decided to write G’s coach a letter (below). I’d just finished writing it when this hit the news: 



Chase was just standing there - and he was attacked! In “self-defense.” As it happens, I have many close friends and family who are people of color and/or autistic. But I like to hope that just because one isn’t related to or close friends with a certain “type” of person doesn’t mean they are “suspect.” Chase’s story reminds me that DIFFERENCE reads, to so many, as DANGER. Thus, children with differences are vulnerable, perhaps none more so than black male children. 

Does it have to be this way? Must difference lead to ASSUMPTIONS? And why are those assumptions usually negative? Let’s just be very logical here: how can a SKIN COLOR or DISABILITY be THREATENING…unless  wholly through ignorance?

And what, exactly, do we mean when we use the word DISABILITY? Believe me - I know it’s complicated. But I’d like to focus on one aspect vis-a-vis Chase Coleman, and my G: For one thing, a difference BECOMES a disability when one is seen as less than, or treated as such, or denied opportunities or inclusion or even basic assumptions around shared and equal humanity BECAUSE OF THAT DIFFERENCE.* 

I know this is a broad definition of disability, but it comes from my and my family and loved ones’ lived experiences. Differences such as SPD and autism are often called “invisible” disabilities, where being Black is (usually) not invisible….Nor is being Black known as a disability per se. But by the definition of this one aspect of disability I am discussing here it may certainly be experienced as such. 

In this context, a disability is something that prevents someone from living their best life, from being their best self, from full self-expression or activity or participation…NOT because of any quality inherent to their being (neurology, skin color, gender, body type or shape, intellectual capacity, LGBTQ status, nationality, ethnicity, age, religion…), but because of the way their environment is designed (for “normal” people) — or because of the attitudes - including ignorance - of others

How wrong is that? 

We, in our communities, need to find ways to celebrate difference, not squash it. We need to help one another see each other as human beings, united in this crazy, hard, wonderful, awful, confusing thing called life. Be curious about each other, rather than thinking we KNOW already who others are because of appearance or labels.

WE need to be Champions of acceptance, understanding, inclusion - for ALL the different kinds of Champs out there!

Dear Readers, if we will not be the champions, who will?

On this deeply fraught election day, where so much is at stake for immigrants, women, people of color, ALL OF US…Here’s one tiny way I have tried to explain G’s differences to so that his unique strengths and challenges will be seen: 

Dear Coach,

I wanted to thank you for working with [G] this fall, for pushing him and expecting the best of him. He has improved immeasurably (from 39 to 27 minutes - and I think he may even do better at the state meet!). He has also grown in confidence.

I wanted to fill you in on a few things about [G], in case they are unclear. You may think he is not taking things as seriously as he should or not working as hard as he can or being as responsible as he should...

As you know, [G] has asperger syndrome. Everyone with asperger syndrome is unique, but some of the aspects of it, such as social and motor challenges, are shared by many. 

[G] has something called low muscle tone. This means EVERY physical activity is harder for him because his muscles have to work much harder than they would if he had average or high tone. I'm sure you know what this means, as an athlete yourself, but you likely don't know what it actually feels like. I do - because I had low tone myself as a child. 

Everything my athletic family did (biking, running, soccer) was practically torture for me. In those days no one knew about this stuff. Anyway, I became very athletic over time and somehow overcame that disability.  I have "normal" muscles now for the most part and physical activity feels enjoyable - **completely different** from how it felt when my muscles didn't work efficiently or well. I think this will happen for [G] too, but I speak to you as an athlete who once struggled as [G] does: please understand that running is Literally harder for him than for the other kids.  He's not exaggerating or making drama.

Also, [G] has many motor skills and balance issues. It's very brave for him to get up again and again when he falls many times, sometimes quite badly, every time he runs. I know other kids get hurt from time to time, but [G] is getting hurt practically EVERY time - and he's getting up again and running again

It's also a mixed bag that he feels humiliated when he falls. On the one hand, it's actually social progress for him to realize there is a humiliation factor in falling. At the same time, he now has to weather that humiliation in front of his peers, for things that are out of his control (motor skills, balance). I know his teammates are supportive, but he still feels bad. So it's DOUBLE brave for him to get back out there with both physical and emotional pain.

Finally, I know sometimes [G] can seem flaky, but this is his central disability right now: a lack of executive function. I am less surprised when he misses the bus for a meet, or leaves a shoe (WITH HIS PHONE IN IT) in the port-a-potty where he changed into his uniform, than when he remembers, every single day, his water bottle, his school clothes, his phone…

I want to share with you that the [G] you are seeing mostly keep track of bus times, his stuff, transitions, etc. could never have done this even a year ago. I am happy every day that he keeps track of his stuff. I know it's a "normal" thing to do, but for him it's a huge leap - something that gives me enormous hope for his future.

So even though I know [G] is one of your slowest runners, to me he is a true champion and I am beyond proud of him. Thanks for being part of this amazing growth for him.

Sincerely,
[Full Spectrum Mama]

Thanks and Love, Dear Readers…Now please go VOTE,* if you have not done so.
Full Spectrum Mama



* For a small dose of perspective on just how good humans are at judging the worth of different kinds of people, consider that women in the United States did not have the right to vote until 1920. Yes, 1920!!!! Less than one hundred years ago...









Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!



Thursday, July 17, 2014

RIDDIKULUS!

G’s latest invention is a Lego Boggart game. Boggarts are a type of magical beast in the Harry Potter books known for taking the shape of your greatest fear. In The Prisoner of Azkaban, the students learn how to conquer boggarts by facing one who is kept temporarily in a wardrobe in the teachers’ lounge.

G attached a spinning tube to a play board. You spin the spinner around and something appears -- “like the boggart coming out of the wardrobe.”  G spun the “wardrobe” to reveal a headless Lego guy mounted on the back with a scrap of paper that said “[G]” on it.

“That’s your greatest fear, Mom: a headless or dead [G].”

GULP. Yes.

I love my children equally. But Z will trounce anyone or anything that gets in her way, while G has a more tender, awkward way in the world. So I don’t really worry about Z’s survival. Whereas G could trip over his own foot and fall off a cliff, and he’d be yelling “Love you, Mama!” as he fell, just for example, not that I am actually thinking of this scenario.

Then another spin: “This one is [Z’s] greatest fear: a dead Mama.”

Um, whoah. The label now reads “Mom.”

Right again! It’s becoming clear that G is a LOT more perceptive than he lets on, or than he – not being a verbal processor -- can express.

Z’s greatest fear may well be losing me, as she is a most devoted daughter despite some of the challenges of our relationship. I am struck lately by how little she resents me, in spite of my (attachment-disorder-dictated) extraordinarily strict boundaries and constant monitoring. I am all over her like white on rice (I guess in our household I should say brown on rice) to make sure she feels safe, stays within important boundaries, and does right. And – unlike many strangers and even loved ones who look askance at therapeutic parenting -- mini-girlfriend just gets it. She knows her Mama does this all for her. She knows she needs it, maybe even better than I do. And she loves and respects me above all.

“And here’s mine, Mom…Mom?”

I’m still speechless.

“Here, look!”

I dare to peek: his scrap reads, “pokemon never existed.”


                                                     Figure I – “pokemon never existed.”

“And don’t worry, Mom. I made the spell to fix everything!” says G. Then, as he learned to from the book, he declares, “Riddikulus!”

Another turn, and the clasp on the side of the tube holds a scrap with a funny face.


                                                                 Figure II – “Riddikulus!”

Harry and his friends know the trick with your greatest fears is to make them funny.

Apparently, so does my son.

Love,
Full Spectrum Mama