A WINTER PRAYER

Hate cannot drive out hate, only love can do that. 

Martin Luther King Jr. (from Strength to Love)

Dear Persons,

It’s easy to grow bitter. Sure, if you have a child with special needs, losing faith in this world is often tempting; but in this divisive political climate being human is an indicator for general angst. So yeah, we need help. Here is my Winter Prayer to the Universe, the One Song we all share: 

Dear Universe,

As the days grow colder and shorter,  may the extra darkness offer rich soil for growth. May the falling temperatures allow us to, um, appreciate the warmth betterer? 

May there be less wintry mix precipitation and black ice and more coziness and sparkle. 

How about no black ice.

May those entrusted with our children (Betsy DeVos, I'm talking to you!!!! [Oops, did I write that out loud?]) actually have their best interests at heart. 

Likewise, may those entrusted with our only home, Mother Earth, do the same, dear Universe. 

May we - in the waking hours we can muster this season - find the strength, energy, and time to be there for each other, and to find the resources we need to advocate for and nurture our differently-abled children, selves, family, and loved ones. 

May we learn to ask for help when we need it. 

Before we judge, may we consider the possibility of unseen struggles, mental health issues, “invisible disabilities”…

May we learn not to take things personally, even as we refuse to countenance injustice. 

Can those “All Lives Matter” people make a Black friend, please? 

Might we send a contingent of willing trans persons as ambassadors of queerhumanness to all places showing evidence of small-mindedness around gender? 

Let’s get some drag queens in there, too. They could bring cupcakes from Scott Cakes! And warm coats!

Please sprinkle in some other people with differences that differ from the “norm” in these places (in whatever ways: religion, ethnicity, citizenship status, ability, sexual orientation…), bearing, perhaps, free kids’ books about diversity and inclusion, in order for peoples’ definitions of people to expand. 

Actually, can we have all of these individuals bring their families — whether of origin and/or orientation — as part of their delegations? Can we? And then partner each family with a local family, have them plan and cook a meal together,  and give them a discussion agenda that includes favorite funny movies, animal heroism stories, and, I dunno, high and low life moments? 

Thanks! Because it seems to me that when people see people as PEOPLE it becomes nigh impossible to hate. 

And, just a thought, can we get some people on the spectrum on this whole tax reform thing? Because some of us are pretty good with numbers and our “literal,” “black and white thinking” around, you know, the math aspect might be a strength for the future of U.S. civilization in this particular context. Do you want to know whether a particular change to the tax code will benefit the economically disadvantaged or the middle class? We can actually tell you. 

Come to think of it, may there be progress, however incremental, in people being fairly paid.

Also? The men in charge right now…could they be immersed in a crash course in menstruation, harassment, gender discrimination, childbirth, and motherhood? Also also, working and single motherhood? Thanks. REALLY - thanks. 

Bonus: In fighting injustice and working to empower others, may we never degrade or forget the humanity of all concerned. (That’s a hard one sometimes - healthy anger fuels change while destructive, vengeful rage destroys lives.)

See, because either we are engaging or we are withering. Bitter. And you know what? Bitter people are often cruel. I know this all too well too.

May we hold our loved ones close, knowing that life can be all too fleeting. May we make every day count, even the *&^$ ones. 

Dear Universe, we all cry the same salt tears. May we also have the mental and emotional space to see the beauty, joy, courage, and kindness that coexist with the hard stuff. 

May we retain our hope and faith. May we regain our hope and faith. 

May we find strength through love. 

Love,

Full Spectrum Mama

P.S. What are your prayers, dear reader? Feel free to share them in the comments below, or email me at jineffable@gmail.com.

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

TOO TIRED

Dear Persons,

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!

An InLinkz Link-up

WAYS TO SPEAK UP

Dear Persons,

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!

An InLinkz Link-up

"MOTHER APPEARS DISHEVELED"

Dear Persons,

I was listening to NPR not long ago and ended up sobbing in the car. Again. The segment that got me this time was on voting rights (read it, and possibly weep, here), and how in many states persons who have appointed guardians do not have the right to vote. Whether to apply for guardianship of my son is probably the question I struggle most with on a day to day basis (followed closely by even more terrifying questions about what will happen to him when I am gone). The thought of my brilliant, politically-engaged son being unable to vote was one more tally in the non-guardianship column. I want to always err on the side of presuming competence, yet I always want my child to be able to, you know, live...sometimes despite himself.

I mention this not because this matter is resolved, but to point out that for parents with atypical children, and for people of difference in general, the world out there (your basic radio show, and so on) can be a bit of a minefield.

I have many friends – who I still speak to! – who like to say “Oh, it’s hard being the parent of any kid.” Sure, I will give you that. And I will gladly agree we most of us love our kids the same agonizing, rapturous, heart-expanding amount. But I am not Full Spectrum Mama for nothing: I have one typically-developing child and one who is developmentally and neurologically atypical and I can assure you it is not the same kind of hard! When your child develops differently there may be taken-for-granted, essential life skills that he or she may develop late...or never.

The idea that G will “grow out of it” – whatever “it” is – is thus often meaningless and certainly not reassuring.  For example, all his life G – despite assiduous and almost-constant attempts on my part to change this - has used his clothing as a combination napkin/tablecloth while eating. And that’s when he notices he has food on his face or hands...which he usually doesn’t. In the scheme of things, I’d like to think of this as minor – I mean, G is extraordinarily KIND and FUNNY and SMART – yet how will this be viewed by a potential employer? Or partner? (And no, I do not mean typical sloppiness, my “all kids have challenges/all boys are slobs” friends.)

Or perhaps your child is or you are (as am I) at the other end of the noticing/reacting spectrum and barely able to function because of obsessive compulsive (OCD) needs and/or sensory overload from crumbs and the like?

Maybe G’s table manners will improve someday. Maybe someday I will be able to ignore a single crumb on my finger. But sensory processing differences (SPD) and other neurological differences are often integral to who we are, part of our very biology. Neurodiverse and differently-abled persons may develop neurological, practical, and/or emotional strategies to function in a world that was not designed for them – and sometimes doesn’t make sense - but there is much we will never “grow out” of...

My conservative yet highly clinical estimate is that I worry about G a million, billion, gazillion times more than Z, my typically-developing, typically-abled daughter, even though she has had her issues as all children do...

I usually write more from the perspective of a child advocate, or in efforts to spread awareness and acceptance of difference. This time, I wanted to write about what the parents I know who have children with extraordinary challenges feel like a lot of the time, both to acknowledge and honor them (us) and to spread awareness on this front.

I am not complaining – my child brings me extraordinary wonder and joy every minute of every day – I am explaining.

Those of us with who are different, or have children with differences – or both! – have to navigate more-complicated, often “inappropriate*” (to us!) environments and interactions – environments and interactions that may feel overwhelming, cruel, arbitrary, opaque -- almost all the time. In a very real sense, the “problem” is the world, not our kids/us.

My Meeting Friend became my dearest and most-cherished support-network-of-one when mutual friends who knew our children kept suggesting we connect, and then our paths kept crossing en route to and from Meetings, therapies, etc. etc. My Meeting Friend was once at a Meeting – of which one has exponentially more with an atypical child (and yes I know this from personal Full Spectrum experience) – and glanced over at what one of the “professionals” there to evaluate and assess her son had written on a pad and read, “Mother appears disheveled.”

Now this is a mother who has willingly and bravely made changes and sacrifices for her child beyond what most could even imagine. That very day alone I am positive she had already cooked several different healthy breakfasts taking all individual food allergies into account, carefully planned out ways for both of her children to have their own kinds of successes (including – egads! – athletic successes!!!!) and learning experiences, gone to great lengths to ensure social interactions and a beneficial sensory diet for her son, written several emails regarding grades, social situations, IEP, 504,etc.,  made sure her other child felt “just as important,” oh - and worked at her job...** With a smile on her face.

I am impressed she even had clothes on after what she has been through. But there that note was -- amidst, I am sure, other stuff (such as “EXCELLENT parenting!” and “Kid is PERFECT, just a WEENSY bit unsuited to the average boring old, sensory-/social-nightmare classroom”)  --  ...”Mother appears disheveled.”

Figure I – Disheveled Mother

...Ya think? And I wasn’t there at that particular Meeting, but I do know that she has had the grace to laugh about it ever since.

My friends, do you appear disheveled or know someone who does? From crying in the car, maybe? Are you disheveled on the inside even if you appear “heveled” on the outside? You are in good company.

Much Love,

Full Spectrum Mama

* “Inappropriate” is such a trigger word for many on the spectrum. There are a lot of “normal” things we find “inappropriate,” believe me (and there is no monolithic “we” in either neurodiverse or neurotypical contexts!). Nonetheless our children are often told, especially in school, that X, Y, or Z is “inappropriate”...One hopes that some consideration is given to the possibility that people who perceive and process differently may have different standards – and not always assume that neurotypical standards are the correct and appropriate ones. 

** How do I know these things? Because I know my Meeting Friend. But also because I and most other parents I know who have children with differences do these types of things Every Day. I just wrote a letter to G’s teachers and “learning specialist” while I wrote this footnote.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up