Trigger warning for autistic individuals re. ABA therapy mentioned, though not in detail.

I recently had a conversation with someone who has a disappointing view of disabilities in general, but especially of Autism Spectrum Disorders. I’ll cut to the chase on this one and talk about the part that bothered me most.

We were talking about IEP’s and special services. She was trying to advocate for ABA therapy for my daughter, and not the gentle kind that done properly by a properly trained and compassionate ABA Therapist. The kind that is traumatizing and is advised against by every autistic self-advocate I’ve ever heard from.

Her belief was that for any sort of therapies and services, the end goal was for the children to learn to pass as neurotypical aka non-autistic, through learning “appropriate behaviors” as deemed by parents and teachers and therapists. [If you’re not sure what this means, it’s kind of like people who are not white but are born with light enough skin and European features to “pass for white.” ] She believed that this was best because otherwise life would be too hard for the child and it would make finding a job far too hard, and in helping the child learn to pass as typical then it would help other people learn about her better.

I said, instead of throat punching them, that there was another explanation for IEP’s and special services. The point of services wasn’t to teach her to “pass” as non-autistic or how to be non-autistic; it’s not for the benefit of others that she receive services. Services include responsibilities of the parents to learn more about their child and how to communicate with them on their child’s level. The goals are to teach independent living skills and strategies for learning various subjects so that we can figure out how she learns best and communicates best, and to try to teach her ways of communicating outside of her comfort zone when she feels capable of it. Our goals are to help her with her challenges and encourage her in her talents. Our goals are never to teach her to be someone else because we love her as she is, and want her to “stay autistic.” She was suddenly at my side hugging my arm and saying, “Yes, mmm hmmm” and nodding her head.

I find myself having this conversation a lot lately.


There’s a meme going around with an ancient quote from a sixth century philosopher, Lao Tzu, so-called father of Taoism. It reads:

If you are depressed, you live in the past.
If you are anxious, you live in the future.
If you are at peace, you are living in the present.

I know this is meant to soothe or be, you know, wise. I know that some therapists use a similar approach with their patients.

The more I see this float around Facebook and other social media… the more I see this in my support groups… especially the ones where so many of us have anxiety and depression in addition to our physical disabilities… the more this quote makes me realize how much it’s adding to the stigma and misinformation about Depression and Anxiety Disorders.

It insinuates heavily that we can choose our state of peacefulness, anxiety, or depression. Granted this quote is from the sixth century when they didn’t have the knowledge we have now about neurological differences and disorders like Major Depressive Disorders, Anxiety Disorders, Bipolar Disorders, Schizophrenia, Traumatic Brain Injuries, Intellectual Disabilities, Emotional Disorders, Mental Health Disorders, Behavioral Disorders, and more neurodiversity. Even if Depression and Anxiety aren’t the primary diagnoses, they can still be a secondary diagnosis and still be significant. There’s a biological basis for these concerns.

In other words, you’re born with it. You don’t choose it.

Depression has nothing to do with living in the past. Anxiety has little to do with living in the future. And let me tell you, living in the present is not usually a picnic but is in fact very often what causes anxiety and depression if we’re talking about situational depression and anxiety.

If we’re talking about situational depression and anxiety, talk therapy and using tools learned in therapy and coping mechanisms learned by experience in life can help ease the symptoms. Talking down, getting sunlight, exercise, proper diet, and all of those mood boosting things that we endorse (I do, really I endorse them because they’re helpful) are wonderful for situational depression.

If we’re talking about Major Depressive Disorder and Generalized Anxiety, if we’re talking about other neurologically based depressive disorders and anxieties tied to them, there’s no control involved. There’s no talking it through. It’s not rational. Talk therapy may help, medical treatment may help more.

But it’s not a choice. And this meme… this meme of this quote is damaging to those of us who aren’t just going through Seasonal Affective Disorder or are sad because our boyfriend is cheating. We can’t just buck up and get over it because it’s not situational. It’s biological and we can’t turn it off. We have to let it cycle. A situation or mood may trigger it, but there’s usually a lead up with signs pointing to it. We can’t always see them or recognize them.

Please, if you see this meme with this quote, pretty lettering and all, don’t share it.


I’m having some Cognitive Dissonance. It’s making my head all ‘asplody.

Cognitive Dissonance:
the state of having inconsistent thoughts, beliefs, or attitudes, especially as relating to behavioral decisions and attitude change.

Like many people, I sometimes have trouble reconciling how some people I know can say and do the things they do, and still be the people I’ve known and loved for so long. Others are, well, just as I expect them to be. It’s easy to figure out what to ignore and what to address. I can figure things out and ignore others because I’m a grown ass adult.

Then there are the people who are supposed to be helping me, like, well, doctors. People I pay to pay attention to me even if I’m trying to find myself or vent or get advice or just work out whether I need a mental health med tweak. Like my shrink. You’d think after 10 years she would know something about me by now. In our last appointment it was like she completely blindsided me on her opinion of me, or she grabbed the wrong file and was describing someone else. I actually called her out on it, but she shushed me. I’m a grown ass adult and she shushed me. I pay her, and she shushed me.

I was explaining some parent-teenager issues I was having, and advice on how to handle a situation. I needed some reassurance, but also some actual advice on what to do. Usually she gives an honest critique and a solution, and then tells me that I mainly have things under control and I’m a good parent and not to doubt myself so much. She’s even critiqued that I need to relax the discipline because I’m too strict, I hover too much, while still doing a good job teaching independence. Yeah, conflict? A little dissonance?

Instead:

“You know, there is this pattern with you. All the time you do this. You’re so interested in being your child’s buddy and needing to be the therapist of all of them and you’re so lacking in discipline. You’re not strict at all. You need to learn to be more disciplinarian and stop being the friend.”

I told her:

“You’re kidding, right? You told me the opposite in the last several years of visits and if you talked to my kids right now they’d all tell you I’m very strict. They’ll all tell you I’m not the friend-mom, I’m the Mom-mom.”

“No, no, you’re wrong. I see it in the way you interact all the time. Whenever you bring them in, every time. You’ll see when you bring them in next time, I’ll show you.”

Except I haven’t brought my children with me for at least 6 years. We don’t do family appointments. We have no appointments planned for any.

I think it’s time for a referral to a new shrink. One who doesn’t mix up files and patients, one who pays attention. She used to be fantastic, I’m telling you, but over the past three years she’s become more scattered and said more and more ridiculously weird things. I can’t write them off any longer. I’ve stayed because I need her to help with prescriptions.


All right, everyone dealing with Chronic Fatigue Syndrome right this very minute, raise your hand.

Okay, fine, raise your pinkie finger.

Okay, fine.

Wiggle it, just a little bit! Wiggle it just a little bit, I wanna see you Wiggle it just a little bit, As it groooooves. Wiggle it just a little bit, I wanna see you Wiggle it just a little bit As it groooooves. ;-) Come on!

 

As it grooves, your body moves
Your body starts to get the feeling
And what you’re feeling is happiness

Let your body go as you listen
Let it flow to your system
It’ll take control of your mind
And make you move your behind

As it grooves
You feel the tension
In the air and now you’re hype
You’re getting down ’cause
The sound is just your type

Gn and D-o-s-e
Sticking it to you right
So come on, come on and
Party hearty all night and

[Chorus:]
Wiggle it just a little bit
I wanna see you
Wiggle it just a little bit
As it grooves
Wiggle it just a little bit
I wanna see you
Wiggle it just a little bit
As it grooves

Once the dj lets it spin
It’ll penetrate your skin
It’ll penetrate your soul
And make you lose control

The D-o-s-e’s coming at you
Invading you like a body snatcher
Wether if you’re drink or sober
This here groove is
Taking over your body

And now you’re partying like
You never partied before
You’re jumping up and down
Like crazy on the dance floor

You’re getting busy like a bee
And that’s the truth
I got a feeling there’s
A fire on the roof

[Repeat chorus]

I bet you’re moving your body
From side to side
I bet the groove
That you’re hearing
Is keeping you satisfied

Dancing by yourself
Is bad for your health
So grab a cutie by the hand
And tell her that you wanna dance
As it grooves

As it grooves
You feel the tension
In the air and now you’re hype
You’re getting down because
The sound is just your type

Gn and D-o-s-e
Sticking it to you right
So come on, come on
Party hearty all night and

[Repeat chorus]

As it grooves
As it grooves
As it grooves

Rotate your waist just a tad
Better yet, get bad
Get nasty, get naughty
And if you wanna crack a forty

But don’t drink it
If you’re driving
Word ’em up, y’all
I ain’t jiving

Just kicking it live and making you
Wiggle it just a little bit

And now you’re partying like
You’ve never partied before
You’re jumping up and down
Like crazy on the dance floor

You’re getting busy like a bee
And that’s the truth
I got a feeling there’s a fire

 

No, I’m not apologizing. Admit it. When I said to wiggle it that first time you immediately started singing the chorus in your head.

See, this is what happens when you’re not getting enough sleep to begin with because:

  • You’re in too much pain to sleep
  • You can’t get comfortable enough to sleep
  • You have a crappy mattress to begin with
  • You have insomnia AND Chronic Fatigue Syndrome

You get punchy and a little bit off topic.

You also get moody, and that sucks for the people around you. The problem with getting moody and people know it’s because you’re having high pain and little sleep is they write you off as moody even when you have a right to be pissed off about something. They tend to do it if you’ve called them out on their behavior or their own attitude which honestly? contributes to my bad mood… our moods. ;-)

It must be my problem. It’s our problem. I’m not asking anyone to walk on eggshells around me. I can take some constructive criticism and critique. I can actually recognize when I’m being moody versus when I’m justified. Often, I recognize when I’m wrong before it’s pointed out to me. And yes, I do apologize for moody. I apologize for bitchy. I apologize for being out of turn. No one usually has to tell me. I know it the instant the words come out of my mouth. But it’s not always really just me. Anyway.

Your eyes burn. They can feel gritty, teary, heavy, and burn. You might feel one or all or a dreadful combination. It’s worst when you’ve driven somewhere and you still have to get home you’re driving and the CFS kicks in full force. There’s no adrenaline rush to wake you up. It’s sheer force of will to keep driving to get home. That’s why the next part is even scarier.

Your body burns, and it doesn’t want to move, not even your fingers. It’s an ache. It’s an exhaustion like nothing you’ve ever felt. It’s beyond exhaustion and you can’t find the strength to lift or do anything. Not even to type very much. Not even to wiggle. A little bit.

I’ve had a little bit of chocolate, so my fingers are working off of a sugar high at the moment, which I intend to keep going with a carb burst in a few moments after I heat up some mac’n’cheese. Then everyone pray I get through the day.

Everyone with me? Come one, wiggle that finger. Wiggle it… just a little bit.


Using All The Spoons

Using All The Spoons

I think it was one of my doctors that said,

“There is nothing noble about having to endure severe pain when there are options that will help alleviate the pain. I don’t care if its severe physical pain, or if its severe emotional pain. We put ourselves through too much pain, because we think that it’s some sort of spiritual, strengthening experience and it proves something about us as an individual. I don’t believe that.  Asking for help and pain relief is not a sign of weakness but of pride. Knowing when to ask for help is a strength.”

That’s been rattling inside my head for months, and I believe it’s true.

I’ve seen people online in support groups and in real life say that they endure the pain of Fibromyalgia and Lupus and other chronic pain disorders without asking for any relief from doctors or any support from friends and family because it’s a test from God. If Jesus could die on the cross for our sins then the least they could do is endure their pain without complaint outside of the Fibro support group.

I want to scream at those people that the entire point of Jesus dying on the cross for us was to sacrifice himself for our sins so that there would never have to be another blood sacrifice again to God. No more pain from sin, because he was carrying it. So any pain we’re going through isn’t because of sin, or because God wants us to go through it as some sort of test. God created scientists and doctors for a reason. God created nutritionists and yes, even homeopaths for a reason. To help us improve our health and ease pain. If we try and it doesn’t work, we simply (ha) having found the right combination yet.

So many of us that have chronic pain like Fibromyalgia seem to think that showing signs of pain and asking for help or support is a sign of weakness, and if we show any kind of weakness then others will walk all over us and take advantage of us.

We think that obtaining pain relief and admitting that natural remedies we’re trying don’t work well enough or are no longer working and we need to try something else is a sign of weakness.

We don’t want people to think we’re faking.

We don’t want people thinking we’re exaggerating.

We don’t want people thinking we’re whining.

We don’t want anyone to think we’re trying to suck The System dry and take Your Tax Dollars In Benefits We Don’t Deserve.

We believe that you have a right to judge our pain relatively while at the same time, believing that you have no right to judge.

We believe that we should be able to endure any kind of pain in silence, that we shouldn’t burden other people with our pain.

We believe we’re burdens.

We hope our spouses and loved ones stay by us steadfastly  no matter what, and refuse to see us as burdens and make great effort to understand us even when we’re at our worst moods and least ability.

We believe that our children shouldn’t see our pain and disability and how we handle it…. just like how so many people believe children should never see their parents fight and make up… without realizing that children who witness and learn to deal with disabilities in their families grow up with compassion and an ability to understand disabilities.

We believe we’re burdens even to our doctors ( if we don’t already believe Big Pharmacy is out to get us, poison us, take all our money, and all doctors are in on it). We forget that doctors are our employees who work for us and with us, and we get a say in our treatment. We forget that we have a voice, but that we need to learn to use it.

Our burden shouldn’t ever be someone else’s burden. Yet… when our loved ones don’t ask us how we’re feeling or offer to help us, offer to try to relieve us some how, some way, so many of us are hurt and insulted and complain that our friends and family must not care. We spend so much of our lives hiding our feelings, emotions, pain, and disability that we forget we’re not really letting them in. They don’t really know us because they only know what we’ve shown them until now. If it appears as if we don’t need help or care or support, they’re not going to offer it. If we don’t tell them we need anything, they won’t offer it. If we don’t ask, no one will help.

And if we don’t inform spouses and children that they’re expected to help, they won’t.

Yet we take on their burdens as if they were our own without complaints even if we can’t afford it, and we’ve nearly run out of spoons. Why do we do that? Because we need to prove ourselves. We need to prove that we’re fine and can handle our own burdens, those burdens that no one else is supposed to notice, as well as be helpful and loving to everyone else.

We need to prove that we can overcome. We can bust through disability that’s in our way. We need to defeat disability and illness and disorders and differences. If we can’t we need to pretend and try to pass so as not to make others uncomfortable.

We need to always be Hope and Inspiration. We need to be wanted.

The stigma of pain and disability has been built into  our society for so long that people who endure challenges from disabilities and chronic severe pain perpetuate that stigma by behaving as if we’re ashamed of our pain. That’s what hiding our disabilities and pain really does. When we minimize our experiences and we even go so far as to say,

“Someone else has it worse than I do. I shouldn’t complain.”

We’re saying that we don’t matter enough to be taken care of and to be paid attention to and to be pampered. We don’t matter enough, period.

Do I always want to look for strength in my disabilities? No. Hell no. I have some terribly horrible days where I don’t have any strength of any kind at all mentally, emotionally, or physically. I’m not an inspiration or hope to anyone on those days. I’m not trying to be.

The strength lies in our ability to ask for help.

More of us need to learn to insist on help from our loved ones, and explain what we need when we ask for help and support.

It’s not enough to hope and beg and pray that our loved ones will simply know that we need them, and that they will know what exactly it is we need. The problem is they’re not mind readers. How can they possibly know what we need if we don’t tell them explicitly what we need. Our doctors don’t even know unless we tell them explicitly. And when we tell people we love, as well as our doctors, we need to use a strong voice. We need to use our no nonsense voice in order to get our message across. I’m known for bringing printouts with a list of things I want to talk about. I’m also known for bringing printout of research I’ve done, and I bring links to online research which I know my doctors probably should have done or have already done so that they know there’s a resource that they can go to. When loved ones don’t seem to understand what I’m going through I have learned to show them research. I’m still learning to show my pain rather than hide it. I’m learning that hiding my pain and enduring my pain is not Noble. It does not make me a stronger person. When I need help I am learning to ask for help.

But perhaps even more importantly, when I need help and someone offers their help I am learning to say yes and accept it. It’s hard to do that because of pride, but I have learned that more people than not do have a good heart and even if they don’t understand what I’m enduring if I let them see my pain even if they cannot empathize with me they still want to help. If they can see an actual physical need that’s obvious to them they’re more likely to help. Someone sees simply pain and they don’t know what to do it’s hard to endure it it’s hard to know how to help. People feel helpless when there’s not an obvious task to say here let me help you with this. It’s hard to say what can I do to help you when there’s no clear solution to expect the person they want to help.


My youngest has taken to making declarations around the house. This past weekend she made a decision for the entire family, completely seriously:

Darling Girl: “We’re being British now.”

Mom: “Oh, okay. Thanks for letting me know. I guess we’d better tell your sisters.”

Mom again: “Hey! Sweet Girl! We’re British now!”

Sweet Girl: “Mm hmm. Yes.” ::nods::

So that happened. I still have to inform The Mister and the other sister.


We’re nearly a month into the New Year of 2016. It’s still in that time frame where it’s a Big Deal about figuring out what, if any, resolutions we plan to make. It’s still in the time frame where it’s acceptable to randomly tell people, including strangers, all about our resolutions or our thoughts on them. It’s also in that time frame where it’s acceptable to randomly ask people about their resolutions. Resolutions often tend to be grande, official sounding, lofty goals that we wish we could attain and then if we fail even once in a small step trying to reach it… we quit and consider the entire endeavor a failure.

Right now, though… we’re still in that honeymoon period so failure isn’t an option.

I used to think that asking people what their resolutions are was rude. I’m not comfortable with it, and that’s just how it is for me. I find it to be a personal, intimate thing. I might casually ask The Mister or my children, or a couple of close friends, but generally speaking I don’t ask other people what their resolutions are unless I know it’s expected and it would be rude not to ask. No judgments. It’s just me.

Rather than it being about showmanship and exuberance about having found The Perfect Resolution with The Perfect Method to Keep It is really about accountability for the resolution. People are more likely to follow through with a life-changing behavior (such as couch to 5K marathon) if they tell people about it or even better… they can get a team of people to join them. Accountability.

I also think it’s about getting ideas on what resolutions to try. That, and yes, make comparisons. I know when I’ve heard a new, fresh idea for a resolution that I wished I had thought of it first. ;-)

As I was saying, we’re nearly a month into 2016 and people are still saying,

“Happy New Year! Yeah, great to see you too! Oh, I’m doing well. The kids are great, thanks. That’s wonderful to hear!”

Then someone who is excited about having just joined the local gym or Jenny Craig with the goal of losing 25 pounds in a month continues with,

“I’m so happy to hear that your New Year is going so well. Have you made any New Year’s resolutions too?”

And that’s the golden question. That’s the hold-up for so many people. That THE QUESTION because they want THE SINGLE RESOLUTION that’s the best, that can top last year, the one that they can keep and be proud about.

I don’t flow that way any more. It’s just too much pressure. In my 20’s I started to make it a point to make mini-resolutions all throughout the year. Yes, I started that before it was cool and trendy. So in my case, they’re not resolutions, per se. and so I don’t beat myself up over it if I “fail.” I acknowledge the mistake and then I move on. I do better. I try to do better. I often fail, but I often succeed too.

I like the idea of doing something in between. If you really like resolutions, then maybe make a resolution that has smaller, simple, multiple goals that you won’t beat yourself up over if you miss here and there. If you “fail” a step, you can do it over. If you skip a step, that’s fine. No deadlines, just the little goals that lead to a big goal.

I suppose I think we should just be making these resolutions and confirmations to ourselves all year long and not wait for the New Year to choose to be better versions of ourselves. I think that’s part of why I don’t like the idea of big, flashy resolutions that set us up to fail. I like the idea that being good to ourselves and to others, living with kindness and a forgiving heart, is the really the basis for our goals.

If you need some ideas when someone asks you what your resolution is this year, here are some ideas. I don’t mind if you use any. I’ve used most of them if not all of them. I’ve succeeded in many of them, failed at many of them, and I’ll probably make sticky notes of a lot of them now and put them up all around my desk at work and at home on the fridge and calendars.

  • Stick to blog topics from start to finish (more often)
  • Spend more time with the children/spouse/parents this year
  • Read more books this year
  • Keep a food or exercise journal
  • Use spellcheck everywhere
  • Designate one day each week as TV-free
  • Designate one day each week as  social-network-free
  • Designate one day each week as mobile-phone-free
  • Use the recycling bins daily at home, at work, and when you see them in public
  • Keep recyclable bags in the car so that when out and about, any of your own trash can go into the bags to throw out later
  • Pick up other peoples litter and throw it out
  • One day every week start a new daily healthy eating habit, and stick to it as long as possible
  • One day every week start a new daily 5-minute exercise, and stick to it as long as possible
  • Start writing more handwritten thank you notes
  • Learn a new recipe every week and if it’s a success, add it to the monthly rotation
  • Every day, compliment or say something nice to one person I know AND one person I don’t know
  • Be more conscientious of responding to voice-mails/e-mails within a day of receiving them
  • Once a week at work, do a 10-minute tidy of the work desk
  • At staff meetings, try to speak up more
  • Use more positive language this year even when discussing negative topics
  • Cuss less frequently, but when cussing be sure to use some really good ones; just remember not to do it so much in front of the kids
  • Eat more chocolate/cheesecake/spinach/avocado
  • Once a month a new food never tried before
  • Clean out the fridge once a month (or have one of the kids do one shelf as a creative discipline measure for a really bad thing… it works)
  • Decrease frequency of eating out and fast food
  • Try different discipline tactics with the kids; continue to be creative, but do some unexpected things (I don’t endorse public shaming of children; it’s caused kids to commit suicide and isn’t really creative or loving or beneficial or educating)
  • Drink more water; use a reusable water bottle with a self-filtering system in it so that bottled water can stay on the store shelves :-)
  • Try a Couch To 5K just to see if it can be done (holy Moses, I think if you can do this, you rock)
  • Pay more attention to health issues, and then make and keep doctors appointments
  • Be more conscientious of other peoples time and arrive to appointments, meetings, and events on time whether professional or personal
  • Smile more in pictures
  • Take more pictures
  • Be in more family pictures
  • Print out more pictures to keep in a physical album in addition to digital albums (why is this so HARD?)
  • Visit grandparents more often (or aunts, uncles, cousins, great-something-or-other relatives)
  • Be more conscientious of manners
  • Apologize first even if it seems to physically hurt
  • Forgive more often even if the other person hasn’t apologized
  • Remember to water the office desk plant before it dies like the bamboo plant Mom gave as a gift, the one that wasn’t ever supposed to die no matter how abused it was
  • Seriously, water that plant and if the office it’s in doesn’t have natural sunlight, take it out into the sun sometimes or else get a plant that thrives without sunlight or water
  • No, really
  • Trust me on this one
  • Sing more
  • No, it doesn’t have to be to the plant in the office but it could be
  • Singing in the shower is fine because the acoustics in the bathroom make anyone sound awesome
  • Send more birthday cards to people in snail-mail a.k.a. USPS
  • Speak up for yourself more often
  • If you see someone else being mistreated, it’s your business so step in and speak up for them
  • Every so often, get treated to a mani-pedi
  • Don’t forget to go to the hair salon for a real pampering haircut and treat your hair well this year
  • Get a humidifier for the bedrooms and remember to check the filters weekly :-)
  • Treat your hands and nails well
  • Add a new anti-aging beauty trick every month to your regiment; find a facial moisturizer you like; find a face wash you like; find a hand lotion and a body lotion you like; indulge in a lip regimen that will last a couple of years; indulge in an eye regiment that will last a year
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