WHAT'S THE BEST KIND OF PARENT?

Dear Persons,

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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ARE YOU SPOILING YOUR CHILD?

Dear Persons,

I’ve been told — by people I respect, people I love — that I am spoiling my child (and I’m sure plenty of others think the same thing). 

Does this happen to you? It’s infuriating! 

At the same time…I get it. 

Figure 1 - Perceptions of Spoiling

Here are some sample phrases I say to my son every day:

“You’re the greatest!”

“I am so proud of you.”

“Do you know have a heart of gold?”

I believe that my son, who is on the autism spectrum, and has ADHD and other learning, neurological, and motor differences, needs to hear someone say such things about him. 

True things!

Am I building him up too much to overcompensate for a world which often devalues those with differences? Is he spoiled if - partly because of the ways I celebrate him, and in spite of his tough times in many realms (social, academic…) - he thinks he is all that and a bag of chips? 

Some people think so. 

When chore time comes around, because he has significant challenges with executive function (as well as focus and fine motor stuff), his chores are more simple than those my daughter performs.

Is this fair? Is he spoiled in what I ask him to do? 

Some people think so. 

Parenting two children who possess extremely divergent strengths, I feel Fully qualified to state that as parents we know what our children can and cannot do.

But we do need to leave room for them to grow - and sometimes push them to do so. 

I want my son to feel good about himself. Apparently that (rather counterintuitively) involves sometimes letting him take chances and fail. Offering constructive criticism. I’m working on these. Trying to grow myself...Self-reflection is one of our most important -- and hardest -- practices, both as parents and as human beings! 

I desperately want my son to develop practical life skills; but he’s developing these at his own pace. Could I sometimes ask for more from him? Probably. Still, people with developmental differences…well, they develop at their own pace. Some of what people may see as spoiled might have to do with my child not “acting his age,” because, on some levels, he essentially isn't his "age." 

My parenting purposes here - helping my son feel good about himself and helping him develop life skills - actually seem to sometimes be at odds.

See, it’s such a fine line, this parenting of children with differences. I hope I’m doing it right, but at least I know I’m doing the best I can. Dear readers, I know you are too.

Figure 2 - Venn Diagram of Spoiling Factors

Are you spoiling your child? Am I? I don’t know. (Sorry if you thought I had the answer!)

I just want my children to be as healthy as possible in this zany world. 

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!

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DIFFERENT DIFFERENCES, DIFFERENTLY DIFFERING

Dear Persons,

Are you and/or your child(ren)…”different”???

As a child I didn’t see difference as significant. I think I noticed that people had different skin colors, genders, ages, spoke different languages, etc., but none of these distinctions held weight for me.  This was partly because I grew up in diverse environments (Panama and the Bronx, then Westport, CT), and partly because my brain has always been a tidge you-know-what.

I’ve been thinking lately about how the ways we and/or our families and/or loved ones differ from the “norm” actually change and have different repercussions and benefits over time and in different contexts. 

Those lists where people suggest “Things not to say to the parent of a Special Needs child” are a good example, because those things change. They change from parent/person/child to parent/person/child. And they change as children grow up and as people grow.

When my son G, who is on the autism spectrum, was little, “what not to say” would have been, well, just about anything since I personally - unlike, um, every teacher he ever had -  thought nothing was “different” about G; in elementary school, our biggest challenge was getting G the support he needed (and, at times, avoiding support he didn’t need). 

Now, I dread people telling me “So, G will be getting his Learner’s Permit soon.” Um, no? And could you not bring that up with him, please? I watch my friends with kids G’s age rejoice in their increasing freedom, knowing their children’s paths will differ in significant ways from my G’s, and I have mixed feelings: glad to have my dear child around longer, isolated, sad about that lost freedom, worried about his future, super proud of him just as he is…

(Please note, statements like, “Oh, every kid does that!” or “Every parent worries about their child’s future” - meant, probably, to be reassuring - are usually on the “not to say” list. It’s not the same. We know our kids, we know what their challenges are, we know the Full situation, so…) 

With my daughter Z, who has struggled with an attachment disorder, what has gotten me all along is when people judge my parenting (they tend not to judge HER because she is so. dang. charming). Therapeutic parenting for attachment disorders is super strong on boundaries in a way that is anathema to most of my crunchy, progressive community. For most of Z’s life, I’ve suffered when I’ve felt that people were blaming me for my daughter’s rages and tantrums. Now, I cringe when people indulge her when she is in fact testing and manipulating them.  I cringe when I have to intervene in ways that seem too strict to people who have not wrestled with attachment disordered behavior in their families…

And she - smart, tough cookie - totally knows both how to work it and why I act as I do. After she’s done being mad, she appreciates my efforts. But I know there are plenty of parents who think I’m a so-and-so. Now? I don’t care so much. Before? Yeah, that was hard. So that’s a change…

More changes: My son’s learning differences seemed to impact him most early on. They are still a major factor, as he is still in school (and they will remain something of a challenge his while life since his learning differences have non-academic implications as well), but as he moves out into the wider world his social and developmental differences may become more significant. My daughter no longer explodes in public, but she’s still contending with a need to control her environment that sometimes causes less-than-healthy behavior. As she grows up, I can see ways in which this may even become a strength, though I worry about anyone who tries to oppose her!

I guess what’s now really sinking in is that I thought once I knew there was something different about myself/G/Z, we would get a label and figure everything out and that would be it. No. And also? Labels change: Since G’s diagnosis with Asperger’s about seven years ago, Asperger’s has been officially folded into the Autism Spectrum Disorders (I say “Differences”!!) diagnosis. 

Even our understanding of labels changes as we see how individual ways of being, thinking, acting manifest over the days, weeks, months, years; as certain labels and conditions are added into the mix, and/or others are removed; as one issue that felt all-encompassing is replaced by another - or by a period of relative stability and ease…Over a lifetime, difference plays out differently. We learn and make mistakes as we go along. 

Sometimes we underestimate or limit people based on prior abilities, and it’s important to remember that we all - no matter our labels/diagnoses/challenges/disabilities/abilities - have the capacity to grow.

I wouldn’t trade either of my kids for any other, less-different child for all the world. Like most other parents, I happen to think they are the two bestest kids on this planet. At the same time,  they are not special snowflakes to be sheltered and protected from everything, especially now that their differences differ differently because they are growing up. We’ve learned that these differences make some things harder and some things easier for them, and, together, we are finding ways of both celebrating and scaffolding our differences in ways that allow for growth and change. 

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!

An InLinkz Link-up

THE LINGO

Dear Persons,

A good friend texted me the other day to say her son had called someone a “midget” and that didn’t seem right to her. Did I know a better word? I didn’t, actually. I wrote back:

Oh dear. With these things I think the Most important thing is what the person him or her or their self wants to be called…Person-first language was/is a trend (person with autism, person with dwarfism...), but that hasn't entirely worked out either. I've heard "small person," but - ? Complicated. Pretty sure “midget” not good tho...

Have you read Americanah by Chimamanda Ngozi Adichie?

The startling revelation in this book, for most people, is that being black is a thing in the United States in a way that it is not in Nigeria…We grapple with race in this country in ways that some other countries don’t, because of our terrible history of slavery, because of demographics, because of ongoing racism…In other places, other characteristics separate or unite people! Sometimes communities even form over shared differences - neighborhoods or meetings where people share certain qualities that may alienate them in the mainstream of a  given context. 

Being different is an issue only because, while we all live in somewhat diverse environments,  there are in every environment traits that most people share or that are considered “the norm,” such as heterosexuality, “typical” neurology, “white” skin, “black” skin, cys-gender identity, biological-family formation, “typical”family structure, “typical” ability, shared nationality, and so on…

This is changing. 

I see people noticing how random and inherently unimportant such aspects of people are; I see people celebrating diversity; and I see people trying to approach differences with more sensitivity. 

Parents of children with differences or people with differences are sometimes seen as “experts” on difference, but mostly we are just used to being thoughtful about such things in ways that can be new to some.  

So here’s my main suggestion: ask. 

Ask people what they want to be called. 

If you can’t ask, do the research to figure out the most respectful way to say what needs to be said.

Mostly, just try to see people as whole people, rather than reflections of a particular aspect of their being. 

Thanks and love,

Full Spectrum Mama

P.S. Even “Voices of Special Needs” might be taken as offensive by some: who is speaking for whom, and why are these needs “special?” As a neurodiverse person and a member of a family formed by adoption, I speak out about these topics as someone who is fundamentally enmeshed in such identities and speaking from personal experience only; I share our experiences in the interest of spreading understanding and awareness and inclusion. 

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!

An InLinkz Link-up