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 daughter 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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Tuesday, January 10, 2017

SHOULD I HAVE SAID SOMETHING?



“Speak your mind, even if your voice shakes.”



Late October. I am on a walk with my puppy, who has just been diagnosed with Lyme. I stop to chat with an elderly neighbor, and we get on to the topic of tick “prevention” meds, veterinary care in general…She knows I am a writer and editor and tells me I “should have been a vet - what with the cost of tick medicine…” She says her granddaughter wanted to be a vet but “instead works with autistic children,” and, “What a mistake! It would’ve been easier to work with animals!” As I often am in such situations, I am, briefly, paralyzed. I wonder if I should say something. And I choose not to do so. 

For one thing, my neighbor is elderly and I don’t want to seem confrontational. For another, I sometimes get tired of always having to explain things and advocate; I save that energy for where it really matters: primarily for school, family and close community, and for thinking about and researching G’s future options… 

Later I realize it seemed like it would have been an “easier” choice if she had said “women” or “Chinese people” instead of “autistic.” But it’s NOT. In some ways, there’s a big difference between a casual statement by a neighbor and bullying or discrimination…But in a very real way these are all on the same continuum. 

Dear Persons, I can think of so, so many similar instances when I have said something about injustice or discrimination or stereotyping and some where I have not . Times when I have been angry and said angry things. Times when I have been bullied for standing up for my child. Times when I have been articulate, convincing, empathy-inducing. Times when I  have been speechless, like when someone yelled a racist slur at my daughter, or just plain confused. It can be scary to speak up, and, although I usually don’t lack the courage, per se, my sensory processing differences (SPD) can mean that when I feel scared I can’t also process a coherent thought/response until after the moment has passed…


And then…the election. Even my readers abroad know which one I am talking about. 


This is a moment in history when it is important to be very clear and so I want to say something here. Here is one place I speak up, always. I cannot separate out whether my stance comes from having one child on the spectrum and one child who is a person of color (and many family members and close friends of color and/or of non-hetero orientation/identification and/or on the spectrum and/or of non-Christian religious affiliation…), but my stance and our stance as a family is very simple:

The Full Spectrum family stands with all people of color and the Black Lives Matter movement. We stand with the First Nations of the world in their struggles for recognition, sovereignty, and protection of lands. We stand with our brothers and sisters on the spectrum, our disabled brothers and sisters, our differently-abled brothers and sisters, our diffabled brothers and sisters. We stand with our immigrant brothers and sisters. We stand with our Muslim brothers and sisters. We stand with our Jewish brothers and sisters. We stand with all women, as well as with LGBTQIA communities, with all people who believe in equality and the right to choose who we love, who we want, what happens to our own bodies  - and, further, we believe in equality and the right to choose even for those who don’t agree with us

We stand with all oppressed peoples, as well as with all people with financial, white, or other privileges who believe in equality and use their privilege(s) for good. 

This goes beyond wearing a safety pin, attending protests, and writing postcards as part of the Local Love Brigade, to being willing to open our home and beyond. When they come for you, when you need solidarity, call us to your side.  

Would we hide you? Yes. 

This is one time our black and white thinking serves us: there’s no room for equivocation here.

We families who have significant differences from “the norm” are used to standing up for ourselves - and, often, others. We might sometimes be tired, but we are experienced advocates, sometimes to our own surprise. These skills are especially important now, as we see hate crimes and discrimination on the rise, and ignorance being celebrated.  Sure, many will not listen or truly hear us, but some people will, and that makes our efforts worthwhile.



Figure I - Not Saying Something vs. Saying Something


Should I have said something? Yes. Next time I will, even if it’s hard, even if I’m worn out, even if my voice shakes. 

I hope you will, too.

Love,
Full Spectrum Mama



P.S. Coming up in my next post: ways to say something!



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!