Tuesday, July 11, 2017

HOPE


Dear Persons,

Last week, I took my daughter Z on a mother-daughter trip to Emily Dickinson’s home. Since Pardner is a chef, we have lots and lots of time together, but are almost always with her brother, G. The outing — happily anticipated by me —  involved a lot of side eye and bored resignation on Z’s part. Parsing which aspects of her attitude belong to rote teen sullenness, which are characterological, and which are attachment disordered is pretty much impossible, so I will just say that she was not terribly impressed. (She was “sort of ok” with the parts of our “adventure” that involved food…)

We were able to have this delightful alone time because, this spring, G got into a federal college prep program for underprivileged and/or underrepresented teens that provides several residential weeks of classes and other enrichment in the summer. 

I sobbed for days when G got accepted into this program. It’s not that I’ve never had allies. There have been lots of angels along our path (and some less-helpful people as well, to put it mildly…), especially certain teachers and helpers in his schools. But this program is comprehensive, and year-round, and it explicitly aims to get kids into college who might not otherwise go. 

I’ve always seen G — with his amazing ideas and creativity and interesting, interested mind —  as someone who’d have a wonderful, inspiring time in college; but I’ve also known it would be a huge stretch, given his learning differences and our income. I’ve been sad about that pretty much since G’s diagnoses.

For the first time, I felt like  a group of people who could really HELP G also really GOT and SAW him. After so many years struggling to get school staff to follow his IEP, or see him as more than just a label, these people were going to spend hours and days and weeks working with G and other teens to build the exact skills needed to get into and attend college!

The program was also going to help…well…ME. This enterprise of advocating for a child with learning and social and physical differences and challenges can be all-consuming. There have been many, many times when I have felt like other people were talking about a different kid when discussing G — and that they basically had never even met the child I knew…

Knowing that this program was going to help me did two major things: it allowed me to finally admit how much I NEEDED that help, and it gave me HOPE. 

Seriously, dear readers, it was a revelation to me how lonely and afraid  I’d felt in this endeavor — so much so that I couldn’t even acknowledge those feelings until there was something to alleviate them. I mention this because you may be in the same boat and I hope you, too, can find that thing or those things that uplift you and yours.  

In the weeks leading up to his first departure, I was increasingly worried as G failed (as always) to brush his teeth unless supervised or shower unless coerced, evinced literally no executive function whatsoever, and had an end-of-semester 9th grade experience in which both his grades and behavior (at home and school) could have been more than a scootch better.

In his first week at the program, self-regulation issues got the better of him. I was barraged with emails with innocuous yet terrifying headlines like “Update,” and “Checking in.” My Meeting Friend — having endured such periods of uncertainty and fear herself when her child was on tenuous ground in various programs — helped me survive. She gave me hope. 

Together, G and I and the staff of the program came up with strategies (including having no phone whatsoever) to assist G to fully participate. We gave me hope. He’s in the third week of the program and so far says it’s “fun” (his highest compliment). 

And Z? She’s doing her own camp, where she can be surrounded by other sour teens. I am pretty sure she’s having “fun” too!


Figure I - “Lego Construction Representing Unity and Difference” (when G saw I was working on this blog post he made this for me, saying, “Everybody expects Lego stuff to be square and this is not - it’s different. And the black and white together represent unity.”)

(Figure II - “The Usual Square Lego Form”)

It’s a little bit of a vulnerable thing, to allow oneself to hope. There have so far been ups and downs, but I’ll take it

I shall leave you with this poem, by a woman many people speculate may have been on the autism spectrum — and who certainly was both extremely “different” and successful in her own ways. 

         “Hope” is the thing with feathers 
         By Emily Dickinson

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.



Love,
Full Spectrum Mama












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, June 13, 2017

DIFFERENT DIFFERENCES, DIFFERENTLY DIFFERING


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 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, May 9, 2017

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 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, April 11, 2017

TOO TIRED


I’m tired this week, too tired to really even think up a good, snazzy blog post.


…But it occurred to me that it might make sense, for this month’s Voices of Special Needs Blog Hop, to acknowledge that parents (and caregivers) of people with special needs often get really, really tired. On top of all the “regular” parenting stuff that makes “regular” parents pooped (whatever “regular” means in both those contexts), there’s just more general day-to-day negotiation and oversight with bureaucracies like schools and agencies, not to mention the time spent investigating and dealing with therapists and treatments (and finding the money or resources for these??? Puhlease!), never mind additional efforts at home and in social contexts with our children themselves. 

Here’s a very small example: Does YOUR teen do this every day? 


(Not shown: all pockets bulging from giant pokemon decks. Why picture was taken originally: because when I told him he had to fix his socks - as I do almost every day -  he looked down - as he does almost every day - and said “They’re fiiiiine.” So I tried this new strategy…)

Guess what? He’s tired too.


It’s often exhausting to live in a world that seems to mostly operate by rules that don’t make intuitive sense to you - and that can even sometimes seem wrong or “dumb” (his word). Like the socks-outside-of-pants rule, and others that can be less benign, like the brushing-teeth rule or the sleep-at-night rule (this is a fun one vis-a-vis being tired, right? People with neurological differences, as well as a range of other disabilities, often struggle with sleep challenges), the following-directions rule, and so on… 

My daughter also has special needs. As with many people who have spent time in orphanages, she has an attachment disorder. We’ve worked really really hard  - on our own and with therapists, teachers, etc., - and she’s healed so much. But she still moves in the world with a heightened vigilance and a fundamental lack of trust that can sometimes come out in unhealthy ways.  

She’s tired too. 


And so, I bet, are you, sometimes. Too tired. Of course you are. 

And of COURSE we love our children with all our hearts. Duh. It’s just that this world is somewhere between a little bit and a lot harder every day when one has and/or ones children have differences from the “regular” (with the usual disclaimer for this word) people for whom the world seems designed. 

It’s hard being a parent. It’s hard being a parent of a special needs kid. It’s hard being a special needs kid. Heck, my Meeting Friend and I sometimes text each other “NN,” our abbreviation for “Night, Night,” at eight am.  

When Pardner says, casually, “He’s probably not going to be able to live on his own. Don’t you know that?” NN. 

When just getting to school in one piece is a miracle? NN. 

When you worry ceaselessly about your child (or your children) - not because there is something “wrong” with him/her/them but because the world is so much harder for him/her/them to navigate - and thus are moved almost to tears by pants tucked into socks, again? NN.

PLEASE don’t feel alone in being too tired sometimes. I recently texted a mildly-hysterical friend who has a non-sleeping toddler to tell her to remember that when we don’t get enough sleep we often feel way more negative about everything than we otherwise would. Then I thought, “Good one, FSM. Listen to your own words, why dontcha?” Being tired actually isn’t the same thing as being depressed, having an anxiety disorder, or having a too-hard life - but it sure can feel like it!

Can we be gentle with ourselves? 

Let’s try to prioritize getting more sleep for ourselves AND our families, however possible, and taking care of ourselves so we don’t get too tired and remain that way all. the. time.

NN!

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!