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

Holding Hands

                                                 I. Far From the Tree:

For a variety of reasons, it wasn’t until my second year of college – when I fell in with a diverse bunch of women from intact families who remain among my closest friends - that I realized that many families are happy ones. Oh, I don’t mean perfect, but…in the balance…happy.

In retrospect, in a very real way it was I who caused the unhappiness in my family unit. Perhaps if they’d had the knowledge we now have around neurological diversity and Asperger’s syndrome (I know, I know, autism spectrum disorders), they’d’ve coped better with my obsessions, my ideas about justice and fairness, my literality and hypersensitivity.

My teen obsession with King Arthur, Queen Guinevere and the Lady Morgan le Fay made me think I lived not just with the wrong family but in the wrong era. What I saw as truth, honor and nobility was called “judgmental” or “black and white thinking.” I informatively let my family know, on the regular, what I thought of their [normal, neurotypical] values.

With more knowledge of differences my family might’ve known how to address my deep feelings of betrayal at the alarmingly wide variety of turns of events that felt to me like lies and injustice:  if people didn’t do just what they said they would, or bent the truth, or acted unfairly, or didn’t get the right consequences for misbehavior I was devastated. But they didn’t, and we weren’t – happy.

We weren’t a natural match.

By now, most of us in my family have figured most of this stuff out [Hi mom! Not your fault! Different era!], but as Andrew Solomon shows at length in Far From the Tree: Parents, Children and the Search for Identity, families with major internal differences struggle to accept and understand each other.

Which brings me to my daughter. I habitually find myself thinking as to how we’d be one of those normal (-ish) happy families if only Z would just stop acting out.

Having been the “problem” in my family, I never want my daughter to feel that way – consciously or unconsciously.  I am sure she does, though. Here is one little way I am trying to change that.

II. Holding hands in the past:

Typically, we’d be walking along and Z would grab my hand in what felt like a slightly aggressive way (maybe I’d be holding a bag or package, or have my hands clenched together for warmth, or in my pockets), because she’d decided she wanted to hold hands - pronto.

Then I, wanting to be a good therapeutic parent, wanting not to be manipulated (because that makes children with reactive attachment disorders feel scared, out of control and obligated to get even more manipulative), would remove my hand from hers.

After awhile, I would take her hand back, in an effort to show her both who was in control and that I was happy to hold her hand. 

That was our sad little pattern. It felt pathetic, like I was/we were circumventing “natural” love and interaction with a series of control-related scenes, vignettes of mini-failures of affection.

We went along like this nigh on a couple of years ‘til I finally had a bright idea…

Solution? Grab her hand first.

Sweet.

III. Holding hands now:

The funny thing is, the more loving I am able to act in our relationship --  in this case essentially via pre-empting Z’s demands -- the more I feel…loving!

As with my revolutionary (to me) hand-holding paradigm-shift, this loving-revelation might be a real “duh” sort of insight for some, but for this Full Spectrum parent very little is obvious. So much interaction is attributed to what feels instinctive, or comes “naturally,” yet I don’t believe in my heart that such reactions are based merely on genetic relatedness – or the lack thereof.

And another thing: People often assume I know what the “difference “ is between how one feels about a child who was adopted and a child who is biologically ones “own.”*

I don’t.

How can one distinguish between the love one feels for one’s children except insofar as it relates to that child, that person, as him- or her-self? I love each child with my whole heart, as anyone loves anyone they truly love…

What I do know: it’s challenging to parent children with autism and children with attachment disorders for very, very different reasons. It definitely makes you feel ALL the feelings.

As to the rest, there are only more questions: What if my child who was adopted had autism (somewhat similar to me) and my biological child had an attachment disorder (relatively dissimilar to me)? Would I still have the same reactions - the same instinctive understanding and empathy with G’s autism; the same chagrin and desperation around Z’s attachment disorder?

For clues, I look at the way people react to each.

With G, some children are cruel, or merely “tolerant;” the occasional adult is an ignorant so-and-so; mostly, once people get to know him, they see his huge heart and adore him.

I see that some of Z’s peers are intimidated by her; but most charmable humans are charmed by her and, eventually, yes, adore her. 

As the major players in Z and G’s lives know, spend a lot of time with either child and you will encounter exasperation. The more attached Z becomes, the more she may test that connection; and G's listening and focusing skills are "developing at this time" (as they say on Vermont report cards). Chances are the adoration will continue apace. Plus, occasional exasperation with children is…normal, right?

It’s hard to imagine Z would ever be compelled to pluck my hand away from what it is busy doing because she wants to hold hands Right! This! Instant! if she’d been in my arms from birth. It’s taken longer to bond with a daughter who can be aggressive (powerful) and manipulative (perceptive), than it did with my son, a helpless newborn in the NICU.  What love has grown, though, is profound – perhaps the more so for being hard-won.

Every time I grab Z’s hand first it gives her some extra sugar and gives me hope, and, as Solomon says, “Hope is the engine of social changes that mitigate disability and difference.” **

Funny how that works.

Love,

Full Spectrum Mama

* Grrr.

** http://www.farfromthetree.com/hope