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!


Thursday, December 20, 2018

A WINTER PRAYER 2018



Last year’s Winter Prayer pretty much said it all. But prayer is a limitless activity, right? 

So here are some add-ons. 

Dear Universe,

We have seen another bumpy year go by, with some wonderful victories and some devastating losses. We realize that different people may have different perspectives on which is which, but we worry: Why are our perspectives SO divergent? Can there be no middle ground?

Dear Universe, I pray we find places to connect — about our universal love for our children and families, our universal wishes for peace, our universal need for a healthy planet — before it’s too late. 

We are ALL getting older. May those of us who are grappling with health issues along with the usual travails of aging find strategies and ways of thinking that help us heal what we can and soothe and/or accept what we cannot. 

May we value what is gained — wisdom, ease, trust, confidence — over what is lost.

And may those of us who are just launching into the world — especially those faced with extraordinary challenges — find strategies and ways of thinking that support our personal success, our contributions to the world, our relationships, our communities. 

With much love and many thanks,

Full Spectrum Mama


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!