Archive for the ‘advocate’ Category


Today is Primary day in Connecticut. I’m leaving for work early so that I can vote. In Connecticut, we don’t Caucus, we have Primaries and that means we have to vote on candidates within our own registered party. That’s fine with me, because I have my mind made up.

In Connecticut, we’re also voting on House of Representatives and Senators [Edit: in my town/district it turns out we’re only voting on Presidential candidates]. Unfortunately, we don’t get to vote out our governor. We have the governor who’s been voted as the worst governor in all of America. He’s corrupt and I have no clue how he ever made it into office higher than mayor.

Ahem, redirect. Today is Connecticut’s day, and this part of the anxiety will be over shortly.  It’s worth it.

If you’re an American citizen, and you’re 18 years old or older, please register to vote. It’s your Constitutional right. I don’t care what part you register with, I don’t even really care who you vote for as long as you exercise your rights. Maybe you can’t vote today if you’re not registered yet, but you can vote in November. Please. Your vote counts more than it ever has before, especially in local elections.

Please vote. Please register to vote. It’s the most American thing you can ever do. It’s the most patriotic thing you can ever do. ::salutes::

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I’m a non-autistic mom who is blessed to parent an autistic daughter along with her two sisters. She’s an amazing, incredible young lady who is one of the three brightest lights in my life. This Sweet Girl finds being autistic to be a wonderful thing, something that she needs, something she doesn’t ever want anyone to take away from her. She says it makes things hard for her but she still needs it or she wouldn’t be who she is. She finds it shocking and appalling, and it hurts her deeply that even if Autism can make life difficult enough to cause some disabilities, that anyone would think up the idea, let alone that it’s a good idea, to cure anyone of Autism. She finds the notion of vaccines causing or having a correlation to Autism as ridiculous and silly. She can’t find words to explain how odd it is that she should have to defend her existence, or that anyone would insist on separating her from one of the very things that makes her the Sweet Girl that she is.

“Without Autism, I would not exist.” ~Sweet Girl

And so, with that reminder, I’ll just add my caveat now, before April: we shall NOT light up anything blue. We do NOT support puzzle piece comparisons. There are autistic self-advocates and bloggers who explain why far, far better than I can because it’s not my life on the line… it’s theirs. I value their opinions highly, especially those women who I’m so grateful to have found to show me what my daughter’s adult voice might appear like. Through their suggestions and sharing of experiences, it’s helping to make our journey through her childhood and my parenting go more smoothly. I enjoy the insights as much as I appreciate them.

Women like Amy Sequenza are your child. So I’m going to share two of her blog entries.

Why Autism Speaks Hurts Us – Amy Sequenza

Is Autism Speaks a Hate Group? – Amy Sequenza

Plus a bonus one from a different blog.

This is the last time I’m going to say this – The Autistic Beekeeper

And I’d like to suggest looking up #BoycottAutismSpeaks. You won’t regret it. Oh yes, and this handy dandy info-graphic. Share it. Download it. Memorize it. If you’re a parent to an autistic individual, pay special attention to the organizations that help autistic people. Include the Autism Women’s Network in there too. They’re pretty fabulous.

 

You may say, “But my child is autistic and we went to Autism Speaks, and they were really good!” or “But I know someone who speaks very highly of them because of their experience!” My response to that is, “Great. Good for you, I’m truly happy for you.” The issue I have is that any money you donated went towards research to remove the uniqueness from your child that makes him or her who she is. And if nothing else, even a stopped clock is right twice a day. I mean, last year even Autism Speaks came out and said, “Hey y’all, get your kids their measles vaccines.”

And on the Today Show yesterday, their founder, the father of an autistic son, floundered over how amazing his organization is for parents. Parents, not the autistic individuals. The support is there for parents who are stuck in the loop of believing Autism is a tragedy that happened to them through their child, or that God is punishing them. Parents who believe their child is damaged, sick, and imperfect. Not whole. Hiding behind the Autism. The Autism took them away. Broke them. And you know what? Matt Lauer sucked it all up with a dewy eyed spoon. He may have been a little drunk.

Parents… I remember that initial shock and the feeling of wondering what to do next. I remember wondering what *I* was going to do. It took me too long of wondering “why me and my child, why my family” before I was hit with the bitch stick. It’s really not about me, it’s about this spirited young lady I’m privileged to parent. The only “me” part about this was what was I going to do for my child and how to teach her to self-advocate. How would I teach her to become an adult that could navigate an amazing world.

Your child needs you. Show your child how amazing the world is and you’d better remember that the world is still amazing. The world is only as small as you allow it to be. The world is only as tragic as you allow Autism Speaks to let you think it is.

Stop the silencing of Autism Speaks and listen to the autistic self-advocates.

#AutismSpeaksSilencesAutisticVoices

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I’m going to start right out of the gate admitting that I realize there are probably hundreds of blogs addressing displeasure, calamities, and reasons for and against DST.

I’m not those blogs.:-)

I know it’s a struggle for households that don’t have children, and households that don’t have children or adults with any sort of disabilities or neuro-diversities.

We’re not those households.:-)

I could talk about the fact that during the week after Daylight Savings Time kicks back in and we’re forced to move our clocks ahead an hour on that predetermined agreed upon day, are the most car accidents and fatalities. People are late to work that entire week. It takes a week or two for most people to get their sleep cycles adjusted because it may seem like a simple one hour change, but we’re actually shifting our entire day to accommodate this change. We’re losing more than an hour of sleep.

I could do more than mention them and go into lots of detail, but I won’t. I’m too tired.

In a household where there’s someone with physical disabilities (me) and someone with neurological diversity (two teens) there’s far more involved. As small children and through elementary school we would try to prepare by adjusting bedtimes two weeks prior to DST. We’d try to adjust meals as well. Slowly, but surely we’d try to adjust the routine and schedule.

It didn’t matter. We end up dealing with a minimum of two weeks of tragic drama, and with Sweet Girl it’s gone as long as six weeks. With Dear Girl she usually adjusts within the two weeks, but it’s a tough two weeks. Youngest, Darling Girl goes with the punches.

This year, it’s only been five days in and I’m wrecked. My five hour work day should feel like it’s over earlier in the day, but it feels longer, and so I hit my wall earlier than usual. I’m up earlier than usual this week, that’s what my body is saying. I get home and if I don’t prepare supper early to heat up later, I know I won’t be able to from the pain or chronic fatigue. Already this week I’ve had days where I had to go straight upstairs to have a good lay-down.

Sweet Girl’s already-difficult time due to needing a break from school (our town skipped February vacation and they have to wait for April this year) has just been exacerbated. Mornings are already difficult, so ultra-creative motivations and soothings are in order. I just feel terrible because some days I have to simply get Completely Parental and use my I’m Serious Because I’m Your Mom Voice.😦  Prior to coffee sometimes. Sometimes I’m so tired and grumpy right along with her that I actually forget to make my coffee.

Dear Girl informed me on Monday or Tuesday that I need to get to The Guy Responsible For DST prior to having my early-morning coffee while still in my prior-to-early-morning-coffee-mood and Have A Talk with him. I wouldn’t be making any friends. But he WOULD stop fucking around with time changes.

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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.

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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.

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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.

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For reals, yo. I need a new computer at home. Trying to blog stuff on my phone or Kindle is getting tedious. Voice to text is amazing but editing… sigh. Big long drawn out sigh, man. My home computer has no battery and the extension cord is unrecognized by the computer most days. It also still has that ridiculous series of cracks on the screen. I’m over it. And of course I can’t really blog from work.

I know, I know, American working mom problems, but the struggle is real. We pay bills on that thing and the kids do schoolwork on it. I try to work my slowly building home business from it too, but that’s suffering because, well, access.

I just giggled at myself because my inner child suggested starting a GoFundMe account for a new computer and then the inner pretending-to-be-and-adult part of me slapped that little girl down and put her in the corner. She’s not getting any warmed up crumb cake later for dessert.

Oh, speaking of crumb cake, people, Sally’s Baking Addiction Blog (click here, please click here, it will take you to the recipe index) just never disappoints me ever. I love her. I love her breakfast stuff. Even the cakes that you get to call breakfast. And nabbing that recipe, I just realized I forgot to put the cinnamon swirl in the middle, which was fine because it was still perfect. I even intentionally left off the drizzle because we needed something less sweet after all of the sugar we ingested over Christmas. It’s lactose free if you use Greek yogurt in place of sour cream, by the by. I used Chobani vanilla with excellent results.

Anyway, good grief, after taking the long way round as one does, here’s the recipe for the Old Fashioned Crumb Cake because as one knows, you can’t mention a recipe and then not share it. Because etiquette.

http://sallysbakingaddiction.com/2015/05/08/old-fashioned-sour-cream-crumb-cake/

And now I’m wondering how a complaint about my computer at home turned into a rave about a crumb cake recipe.

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