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!

Tuesday, March 14, 2017

WAYS TO SPEAK UP


It seems almost frivolous, in these turbulent times, to think about or do anything that doesn’t directly contribute to the healing and health of our communities, our country, our world. 

I’d planned this post before the inauguration, as a natural sequel to SHOULD I HAVE SAID SOMETHING? Despite near-paralysis over the ceaseless cascade of unthinkable political disastrophes we are all witnessing, I am following through, largely because the topic - ideas on how to safely and effectively stand up to discrimination, injustice, even unintentional/unconscious/well-meaning bias - is more relevant now than ever in our lifetimes. Worse, children today are more vulnerable than they have been in decades due to this administration’s stances on special education, transgender bathrooms in schools, environmental protections, etc. 

In other words, there are now very real risks to not speaking up.

We ALL can do better. In our words, in our actions - and in our responses to the words and actions of others. I myself got schooled after the above post by a wonderful elder who informed me I was guilty of ageism! I’d avoided responding to my neighbor’s ableist slur partly out of “respect” for her being “elderly.” I was told in no uncertain terms that I’d been biased, and that, in addition, “We are much, much younger than you think we are!”

….RIGHT? Right! Good news for those of us who aren't getting any younger…



Now, you know I love a list….So here goes:

WAYS TO SPEAK UP



  1. The Make Up Speak Up:
Let’s say you, like me, find yourself ruminating on a situation in which you did not speak up, for whatever reason. You’re still alive, right? How about speaking up now, now that you’ve had time to really figure out what you need to express?

Here’s what I did in just such a context: I wrote my neighbor from the incident described in SHOULD I HAVE SAID SOMETHING?(Speaking up doesn’t have to be verbal or even face to face - there are many, many ways to speak up, as I explore below!)

        Dear [Neighbor],

I hope you are well. This is your neighbor at  ___, [Full Spectrum Mama], writing. We had a conversation a few months ago in which you told me that your granddaughter works with autistic kids . You talked about how hard it is for her, and said she’d have been better off working with animals. 

I should have mentioned at the time that my son is autistic and I myself am also neurodiverse. This means that both of our brains are wired a bit differently than those of the “average” person. But we are still human beings, with feelings and dreams and a lot to offer the world.

As hard as it is for your granddaughter to work with those children, I can guarantee you that life in a world that was designed entirely for “normal” people is harder for them. I hope that despite these difficulties for all concerned she can see the good in each child as an individual. 

Sometimes, sadly, people who are “different” from us might seem not quite as human as the people we know or more closely resemble. So I hope, also, that now that you know that [G] and I have something in common with those students you will be able to see a little bit, through knowing us, that autistic people are equal and worthy human beings - just like anyone else. 

Thank you for reading, and hope to see you around soon,

[Full Spectrum Mama]

Something wonderful happened after this: my neighbor called me and we had a great talk! She explained that as hard as her granddaughter’s work is, she loves it - and even plans to pursue a higher degree in the profession. I am so glad I “spoke up” as best I could.


2. Speaking Up Directly:  Some people are able to come up with eloquent, convincing, strong-yet-not-confrontational ways to respond to discriminatory statements and actions as they occur. If you are one of those people, have to it! (Just be sure, dear reader, that you keep yourself safe in the interaction. Are there other people around? Does this person/do these people seem threatening? Sometimes - just sometimes! - it can be wiser to be indirect.)


3. Speaking Up Indirectly: Know your rights and the rights of your loved ones. NO ONE deserves discrimination; we ALL deserve to be treated fairly and recognized as human beings of equal value. Here are some ways to indirectly speak up and enact progress toward justice.

a. For Justice in Education: When you encounter discrimination in a school (or school district), or think a school could be doing better in some area(s), write, fax, call, or email (we all have different strengths and comfort levels with forms of communication: choose your medium!) school administrators (consider a variety of levels here - state, district, local, individual school), teachers, and helpers, as well as fellow parents and/or students. Here’s something to get you fired up about education: http://www.loevy.com/blog/education-part-special-education/. Most people get into education because they care about children and students - so, chances are, members of your school community may be receptive. Even if they are not, or if their hands are tied in the matter at hand, at least you’ll know you’ve done your part - and there may be less-obvious or more long-term positive repercussions that result from your efforts. 
b. In Your Community: Write, fax, call, or email local and national organizations to speak up on issues and situations you care about. Join a community group. Heck, form or host a community group. What’s your issue? What do you most care about? 
c. For Political Justice: Write, call, fax, or email your local, state, and national political representatives. As a highly phone phobic individual, I’ve found a sort of speaking-up niche in editing this weekly publication which tells you how to do just that: https://jenniferhofmann.com/home/weekly-action-checklist-democrats-independents-republicans-conscience/
d. Participate in Other Ways:  volunteer, make art, write (call, fax, email…) your local newspapers and beyond, march, protest, discuss the issues you care about, share your personal experience(s) with loved ones and others you encounter who might be receptive…
You never know how much your positive, proactive acts - however small they may seem - may impact others. I promise you, we are - sometimes very quietly, often slowly but surely - moving mountains, together. 


4. Advocacy: Advocacy is a slightly different way to speak up, in that what we are usually doing is trying to get something specific out of an organization  (usually a school, but not always) that already claims to be “doing its best.” I’ve written quite a lot about advocacy over the years here and here and here and here. You can also search for other posts that include references to advocacy on the search button at right. Here, I discuss some tricky issues around wanting people to change - and how one might speak up about that, too.


5. Speaking Up about Harassment: If you see someone being harassed and want to help, this cartoon, which happens to be about anti-Muslim harassment,  offers the best advice I have ever seen: https://www.facebook.com/themiddleeasternfeminist/photos/a.565332650209980.1073741828.565316806878231/1117370921672814/?type=3&theater; if you don’t do Facebook, here’s a link through HuffPo: http://www.huffingtonpost.co.uk/entry/islamophobic-abuse-advice-bystander-hate-crime_uk_57c83652e4b09f5b5e3596fb.  Imagine finding safe ways to just be by the side of every person we ever saw being hurt. Imagine!


6. Speaking Up With Forethought: I’ve thought about how I might’ve spoken up in several situations where, if I’d had the words ready to go in my head, I might have been able to do so. Finding the common thread of humanity that runs through all interactions - yes, even those where we encounter those who bully, discriminate, belittle… - seems key. Working on the above letter gave me a little bit of a template for what a pre-planned response might look like. For starters, I’d include a gentle appeal to the inherent, perhaps very “underlying” or “subtle” good nature of the person(s) I was addressing. Then I’d be sure to draw their attention to the humanity and inherent worth of the person(s) being discriminated against. Some people don’t think everyone is equal. We are probably not going to convince those people in one interaction. But if we don’t speak up somehow, we haven’t tried. Our words might just be the turning point from discrimination to awareness and acceptance.


7. Paralyzed? Oh…that’s just me? When you don’t feel up to speaking up, but know you truly should, try this: IMPROVE/APPRECIATE/CONNECT/PROTECT.

If you google that phrase, you will get a whole lot of different links, but it’s really just a very simple concept that doesn’t need a ton of padding or explanation. Doing one of these things will help! I am not sure where I first saw this suggestion for healing and presence, but I wrote it down on an index card that I keep around as a reminder. The practice has stayed with me because it is truly effective. When you feel paralyzed (whether from depression, rage, sadness, horror, feeling overwhelmed, procrastination, helplessness, hopelessness [I could go on…]…), try taking just one of these words and find even a very small project which engages with that sort of action. For example, looking just in my immediate vicinity, right now, I might IMPROVE by putting away the scattered dog toys, APPRECIATE by looking out the window at the melting patches of snow and tiny bulb shoots, CONNECT by petting my cat, or PROTECT by taking my dark chocolate stash further away from the edge of the desk to be sure my puppy doesn’t get his paws on it.  

In these ways, bit by bit, we gain the steadiness and strength to speak up and do what needs to be done. 


Hope this helps.

Thanks and 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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