Archive for the ‘advocate’ Category

coffeeFor a very, very, very long time coffee and Catholicism have gone hand in hand. You say Catholic, I say COFFEE! You say family mass, I say DOUGHNUTS! MUFFINS! It’s just how the coffee cake crumbles.

I remember sitting in Sunday morning mass as a child, as a teenager, as a 20-something in my hometown church on Family Sundays hardly able to make it through mass because of the tempting odor of coffee wafting up through the floors from the basement/gathering hall and into the pews. As an adult in my current church, I can’t say that it’s much changed (when my pain doesn’t keep me from attending) because it hasn’t.

Coffee and church: It’s like chocolate and coffee or, you know, mocha.

Coffee and church: It’s like cream and sugar… in coffee.

Coffee and church: It’s like sea salt and caramel or, you know, salted caramel chocolate chip cookies … with salted caramel coffee.

Maybe you can see why maybe just maybe some people are a little confused as to why coffee, Christmas, and Christianity are all tangled up together:

It’s because of Family Sundays aka Coffee and Doughnut Weekend. 

Let me just say, though, if you take away the coffee on Family Sundays, there will be a REAL controversy. I remember talking with the former pastor of my current church saying that weekends of Family Mass shows higher attendance. When they have better quality of coffee, attendance is even higher. He wasn’t joking. Not even a little. He felt very strongly that good coffee, frequently, brought families to church.

Don’t mess with Catholic coffee. We will cut you.

Pastor Emily C. Heath is awesome. I’m going to show you why. Christians and Coffee Cups: [CLICK HERE] |Pastor Heath shared some simple and beautiful truth regarding the non-troversy (by an individual who fancies himself to be an evangelist pastor).

Her blog entry could be relevant every year with each new created non-troversy towards the imaginary “War on Christmas.” A strong faith doesn’t worry about every new media-proclaimed outrage. At least, mine doesn’t. But my faith is a whole ‘nother series of posts, ha ha.

What I think I’ll do with the money I could spend on the Starbucks coffee (and for that matter, any money I’d spend on my beloved Dunkin Donuts… mmm Snickerdoodle) is keep some non-perishable food in the car and donate it to the next homeless person I see. I’ll donate more food to the local food bank with my children.

I do find it amusing that the Pagan Goddess in the dramatic forefront of the cups 100% of the time, including Christmas and Easter, doesn’t seem to bother the evangelical versions of my brothers and sisters in Jesus. ;-)

Apart from that, my parting thoughts on what Jesus might think:

Luke 6:20 NASB


Dudes, if you choose to hate others, ostracize others, insult others, scorn others don’t you dare throw me under the bus when you do it and tell them it’s because I said so. Because dudes, woe to you. Woe. To. You.

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I survived another birthday. I survived another year. I survived the changing of the leaves. I’m surviving the bipolar change in seasons so far. I’m surviving working.

I’ve been blessed to see my daughters grow and spend time with my loving husband.

I feel as if I’ve been able to begin healing relationships that need it, but I know there’s room for improvement. I know that I need to put more effort into additional healing, additional relationships.

I’ve just looked back on what I’ve written. It’s odd how I’m using the language, “I survived.” It’s odd that I chose to write about that, using that language, before I wrote about my family and relationships. Is that what pain has done to me in this past year? Has it really progressed that far again? I was going to write about something else but this probably tells me more about myself at this very moment than anything else I was planning to write.  That’s a little bit jarring.

This post isn’t at all what I expected, so I think I may need to come back to the subject later. How odd. Forgive me.

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My littlest advocate, Darling Girl, is in 5th grade. She joined the Sign Language Club at school and the first thing she’s learning is the Pledge of Allegiance. Her first day was yesterday and she already knows the majority of it in ASL. She and the rest of the SLC will be saying the Pledge at the Veteran’s Day Assembly on Veteran’s Day at her school next week.

Watching her practice last night was such a treat for me. She took pleasure in not only knowing the signs, but putting them together in a way that was beautiful and fluid. It looked like a song.

She told me what each individual sign meant. She showed me which signs were appropriate to put her own flair into and how she planned to do that.

She told me how she values her hearing, but wants to learn signing so that she can help make things easier for deaf people because it’s not right to always force them to try to communicate like a hearing person. Communicating is important.

She’s so very right. I think maybe she’s listening. :-)

This darling girl is such a blessing.

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Before I begin, I want to take special care. If you’re an autistic reader and you grew up in a hostile household that is or was unsupportive of your neuro-diversity, you may not want to read further; I don’t want this post to take away too many spoons for the day or the week from you.

There’s a “thing” I saw a few weeks ago that, at the time, I wanted to rant and rave about immediately: An anti-autism page run by Mommy martyrs.

I did but I deleted the rant.

Instead I chose to let this entry marinate for a while to see if I could come to terms with any of it. I don’t think I can. What makes me angry and saddened is the fact that I feel this way as a non-autistic parent: how much more horrifying is it when an autistic individual comes across Mommy Martyr pages?

The Autism Awareness movement has moved headstrong into an Autism Acceptance movement with such ferocity and vibrancy that has so much more to do with the self-advocacy of autistics than it does of their allies and advocates. Isn’t that always the way? Who better to know what autistic people need than autistic people?

Let’s get something straight: It’s much more than an Autism Acceptance Movement. It’s an  Autism Civil Rights Movement. It’s part of the larger Independent Living Movement, one that’s been going on for over five decades.

Goals include forging new, positive attitudes about Autism by dispelling myths; focusing on the positives; teaching others that the challenges can be dealt with and handled with input from the autistic person; educating the general public; educating people who are new to the diagnosis, and parents that are on the cusp of receiving a diagnosis for their children; not putting the onus of education onto autistic people and their families. We need to bring forward new studies but most importantly showcasing the thoughts and self-advocacy of autistic self-advocates. Who better to know what autistic people need than autistic people? Who better to know how they feel and felt growing up? Who better to know how Autism can change from toddlerhood through childhood through teenhood and adulthood than autistic people?

In other words, change the conversations surrounding Autism. Let actually autistic people be the driving force of the conversations. The conversations shouldn’t ever be where autistic individuals have to justify their existence and parents have to justify their pre-natal choices or how they parented during infancy. Parents shouldn’t have to justify shunning the fear-speech and fear-propaganda in favor of embracing their child’s Autism.

So yes, I stumbled into a Facebook group of Martyr Mommies and Daddies who were, to say the least and in the most kindly way possible, unsupportive of Autism. What I saw proves that there’s a lot more work to be done, far more than I realized. There’s not just misinformation out there but outright bigotry and hatred which I knew existed. I read and listen to the life stories of actually autistic people both online and in person. This was on a level far more bitter and sinister than I ever realized.

There’s still a lot of work to be done in getting people to recognize that Autism isn’t a mental health disorder or a psychosis. It doesn’t cause a violent predisposition. I could go on and on all day listing all of the things Autism “is not” but that’s not really what this post is for.

Breathe in, breathe out.

This post is about the terrifying way parents, caregivers, and would-be parents were speaking about Autism on what what supposed to be a support page… but really wasn’t a support page. It was a parent martyr page and yes, there’s a difference. It was an anti-autism hate group. There were things there that I can’t even remind myself to think about, let alone share in this post.

Parental support is when parents, sometimes of a particular specific group of children (possibly even adult offspring) need the emotional support from those who have similar experiences and understand their need to vent, ask questions, express sadness, share particular milestones, provide hope, provide a viewpoint from someone with experience to say, “It’ll get better,” or offer helpful resources. Is it rough being the parents? Sometimes. Sometimes often. But I remind myself, as do other parents that seek support, that during the times it’s rough for me, it HAS to be more difficult for her. It’s those times I can’t feel sorry for myself, those times I need to remain strong so that I can show her I’m here to raise her and show her how to become a grown up. That I’m learning with every experience I’m blessed to have with her.

Parental martyrdom is… well, it’s something else entirely. It’s a state of mind in which parents are mired in a muck of belief and delusion that their child’s disability wasn’t something that occurred to the child, but was an affront and betrayal to the parents.  The parents see no saving grace in anything about their child, although they may claim they cherish the child that was stolen by the disability which of course is what they “really” hate.


I was reading through posts, comments, shared articles, and I felt the worst sort of anxiety because I imagined my child reading what was on that page. I imagined my autistic friends and even acquaintances and consumers reading what was on that page. I wanted to protect anyone from reading that trash, especially parents and young autistic children about to get their diagnoses, from ever seeing anything on that page regarding the attitudes, opinions, pseudo-science, hate speech, anti-autism resources, fear propaganda and parent shaming… it just went on and on.

I felt twisted in knots realizing that most of the fiercest anti-autism anti-advocates out there are non-autistic parents of autistic individuals. These were parents and non-parents alike hating children: my child, others children, their own children, and the adults they would become under the guise of only hating their Autism.

Sound familiar? If you’re Christian it might: Love the sinner, hate the sin.

As a Christian woman I know it doesn’t really work that way. That saying is a cop-out. Hate is hate.

There were also those anti-autism anti-advocates who are scared to death. (I call them Frothers: frothing at the mouth in fear mothers) that their future children or their already-born children will “catch” Autism in some manner. They see Autism as some terrible, tragic disease that steals our children and has become a terrible epidemic.

On this particular page, Autism! Causes! and Autism! Tragedies! lurk behind every closed door, inside every shadow, within every single in-between.

There’s no such thing to them as Autism being natural or having any good qualities. None of them could account for any autistic adults that used to be just like their children that are now speaking or communicating successfully in other ways; holding jobs; dressing and performing other tasks that as children seemed impossible. In their minds, their children were stuck in an impossible snapshot, never capable of any sort of progress or… at least not the sort of progress that would make them appear non-autistic. As so many teen and adult autistic persons have had to endure, the phrase, “Those high functioning people with autism aren’t like my child, who will never _____.”

Anyone who showed any ounce of intelligence, reasonableness, positivity, and acceptance for Autism was called out as a troll and crucified even if they identified themselves as autistic. I knew it wasn’t worth it to join in to add discussion to try to add something reasonable or moderate, because they weren’t interested.

It had become group-think where they were calling for blood.

If there wasn’t blame there was criticism. It was a very scary page to be, very anxiety inducing, and would make anyone choose sterile bubble homes with in-home sustainable gardens that were equally sterile, drinking only your own sterile pee. Except even that has risks, of course. It went far beyond Vaccine Denialism, Anti-Vax, or Anti-Some Vax. Those seem tolerable compared to this vileness.

The entire purpose of the page was to assign blame of How Autism Happens because of:

  • problems in parenting;
  • parental genetics;
  • grandparents daring to raise their children the wrong way even though supposedly those were the Good Ole’ Days;
  • no one raises their kids the way they did in the Good Ole’ Days any more
  • damage to the Earth;
  • damage to genetics;
  • vaccine injury of any kind;
  • damage to all food and water supplies;
  • mom getting sick during such and such stage of pregnancy or just before pregnancy;
  • mom not getting enough or too much of whatever supplements;
  • mom or dad being too old at the time of conception;
  • mom or dad being too young
  • in vitro fertilization;
  • life-saving measures on a pregnancy that was only 6 weeks along;
  • not enough of this, too much of that;
  • stood near an old-fashioned TV too long;
  • eating food from a microwave during pregnancy;
  • ate food cooked on an electric stove;
  • ate food cooked on a natural gas stove;
  • went camping without checking to see if a bear took a crap nearby and the crap fumes didn’t include something unnatural that the bear ate (I SWEAR TO GOD);
  • that one time mom let the playdate mom prepare a snack;
  • the library has books filled with lead paint;
  • filled the car with gas instead of asking someone else;
  • slept too long, slept too little;
  • ate a single turkey sandwich;
  • ate meat during pregnancy;
  • ate vegetarian during pregnancy;
  • ate a hotdog;
  • drank a Coke;
  • ate food at a fair
  • ate that Cheerio off the car floor once
  • had a glass of wine before knowing about the pregnancy;
  • Grandma drank a glass of wine before knowing she was pregnant;
  • Grandma or Great-grandma had her children vaccinated and that’s caused genetic damage so it’s really inherited vaccine damage;
  • Dad’s shorts were too tight;
  • Dad’s vitamin deficient;
  • there were pets in the house;
  • there were litter boxes in the house;
  • the child didn’t play outside enough;
  • the child plays outside too much;
  • the child wasn’t wearing cotton through the age of diagnosis (no, really);
  • the child was wearing cotton, but it wasn’t organic cotton (seriously);
  • the wrong light bulbs in the house, the car, the school, on playdates;
  • not enough organic, all natural, blah blah blah glarg.

Parents who were asking for advice and help about various things, not just what they thought caused and contributed to their child’s Autism, were ganged up and shouted them down. Anyone viewed as showing real support, showing scientific research rather than pseudo-science or pulling a fresh new opinion based on nothing out of their, ah, nostril was a troll and part of the reason for the Autism “epidemic.”

This was a form of extremism I’ve never seen or dealt with.

That page made me fear using my own toilet and trusting my mom and mother-in-law to be in the same room with my children.  It was a Doomsday Page.  The only support was high-fives over sharing new doomsday information and how they’re the only ones informed enough to know where to find the newest or “best” pseudo-science or anti-science propaganda.

The only support was for the poor, poor individuals who ranted and raved, and the poor parents couldn’t save their own children but were trying desperately to save everyone’s else’s unborn child or shed light on The Cause.  It was showing only the absolute worst, most extreme of the extreme negative symptoms that may or may not have been due to Autism. Every single one of them was shouting the other down trying to be heard, trying to share the scariest most rewarding knowledge.

I can’t imagine what assigning blame or causing abject piss-in-your-pants debilitating fear is supposed to accomplish. Living in that emotional state can’t possibly be healthy for anyone. It’s constant fear, constant anxiety, and the amount of anger… it was astonishing.

Finding causes is very different than assigning blame. Maybe it’s semantics to some, but I really think there’s a difference.

Finding a cause indicates that one is looking at scientifically based proof and evidence. I would be fascinated to know if my hypotheses about which side of the family contributed most to my daughter’s Autism is correct. I would be fascinated to know just out of curiosity sake. But I also fear that science could be misconstrued or used improperly in the wrong hands. Finding a cause has possibilities of improving lives and reducing aspects that are disabling, which can mean improving services that are kind and humanity based.

Assigning blame is a vehicle of able-ism, guilt, and shaming and so there’s a hugely emotional component.  It bleeds all over the innocent and colors perspectives in an extremely biased way. Assigning blame and getting caught up in it is a direct lead into bigotry of disabilities and Eugenics. Those who assign blame are those most likely to take any cause found and use it in a manner that would extinguish valuable lives in an effort to improve their own. Those who assign blame are more likely to cause harm. Those assigning blame are more likely to cause harm if they ever find a legitimate cause.

I don’t know why I’m surprised to find a page like that, except that I suppose I believe what I tell my daughters:

Have hope, and the world can change as long as we educate people and will it to change.

It’s in my bones to believe and be positive. I don’t want to believe that our experience, my daughter’s experience, is only a microcosm, and her childhood is a rare thing being accepted completely and loved wholly. I don’t want her to have to believe that she’s lucky to have a mom who accepts her as she was born and willing to help her learn the ways she learns best. Shouldn’t that be a given?

I want to have hope that when it’s my daughter’s turn to set the horizon on fire, she can do it with as many paintbrushes as she desires and wear a rainbow unicorn horn as she does it. I want to know that more and more children, teens, and adults like her are having more and more experiences like her. She shouldn’t be unique in that way. Being loved.

It shouldn’t be unique that I believe pages like that are an aberration and that autistic individuals are a blessing. It shouldn’t be unique that she’s growing up without having to go to therapy for anything other than what her non-autistic peers would go to therapy for:

  • Mom didn’t bake apple muffins often enough, surely not enough in the summertime
  • Mom kissed me too much, and I hate the sound and sloppiness of kisses
  • Mom insisted that the money tree in the backyard didn’t sprout enough cash for all of the video games, chocolate, and Pokemon critters a girl could need
  • Mom wouldn’t let me be friends with the girl who bullied me and who stole my favorite toys
  • Mom couldn’t always read my mind, every second of the day even when she was at work and I was at school and I wanted more than anything for her to just know that I wanted her to pick me up so she could paint my nails

It shouldn’t be unique that when finding out there are people who think Autism is a bad thing, it’s a huge shock.

It should be shocking that people believe the negative stereotypes and refuse to educate themselves by seeking out others who validate their hate and narrow-mindedness. The bigotry should be shocking. So shocking, I think, because of the viciousness of it. No one held back their real thoughts there. No one cared who saw what they wrote. No one cared if in the future their child might stumble across their words as I had because it didn’t even cross their minds that their children would one day be capable of doing such a thing.

I won’t share that page itself. It doesn’t deserve attention. I just think it’s important to know that this viciousness is indeed still out there trying to undermine something beautiful.

I’ve come to rely on this quaint little phrase (I’m sure I’ve said it here before) that my Sweet Girl overheard me say once recently during the course of a larger conversation. I snagged it off of a meme a couple of years ago, so it’s funny to me how this was the phrase she approved of most:

“…and so in the middle of the doctor’s office, I shouted, ‘Being alive causes Autism!’ It just made me so mad.”

She giggled and repeated in a soft murmur,

“Being alive causes Autism. Mmm hmm. Yes.”

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I stumbled across this article on a new-to-me blog that I’m now following. It has some great tips that I never considered when thinking about going to the emergency room as someone who has chronic pain and related issues. This blog entry is talking about CRPS, which is Complex Regional Pain Syndrome. It’s a chronic pain disorder that is separate from Fibromyalgia but can be a co-diagnosis with Fibromyalgia. Each disorder can also be misdiagnosed for the other. She goes into more detail with each bullet point, and you should click the link to see the reasoning why. I’ve begun using these suggestions at work and although it’s been a couple of years since I’ve broken down and gone to the ER, I’m going to be taking this advice.

Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain. |.


  1. Make sure that you have a regular physician who treats your chronic pain.
  2. Show that you have tried to contact your regular doctor before you go to the ER … only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.
  3. Bring a letter from your doctor.
  4. Bring a list of medications.
  5. Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it.
  6. If you have a CRPS card, hand it to them and ask for it to be put in your file.
  7. Ask for a nurse advocate or make sure someone is with you.
  8. If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place.
  9. …keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me

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Mini vent: There’s a support group I belong to, and the vent I need to make isn’t very supportive. :p  Frequently people in this forum complain about the lack of government funding towards Fibromyalgia research. There are frequently petitions that are essentially and literally only “Fibromyalgia Awareness should be important! Get the word out!” and then 8,264 people sign that one while 2,937 more sign one that says, “Make the Government Aware of Fibromyalgia! Make the Government Support Fibromyalgia!” and every single one of them are angry.

The most recent post that tipped my kitten was:


Well… what I WANT to say is:

Don’t rely on the government. If you want funding to go to the right places, to the independent scientists that are invested in the research for Fibromyalgia or Autism or Crohn’s Disease or Alzheimer’s Disease or anything at all that you have an interest in then you do the research to find out who can be trusted, who is legitimate and taken seriously in the scientific community among their peers, and you donate to them yourself. Don’t invite the government into your home unless you have no other choice.

Fibromyalgia awareness and acceptance isn’t something you petition for. It’s something that you talk about. You educate people about. You create noise about it. You advocate regarding Fibromyalgia, and you self-advocate. You share information and research from peer-reviewed scientists and get your doctors involved in the discussion.

The government IS AWARE of Fibromyalgia. They’re not ignoring it. In fact, there was this huge announcement back in 2012 about Fibromyalgia being added to the list of recognized disabilities eligible for Social Security Supplemental Income (SSI) and Social Security Disability Income (SSDI). That’s a big fat statement right there that the government recognizes and accepts Fibromyalgia as legitimate.

Finally, if the government cut funding to NASA, who is responsible for things like better mattresses, coats, boots, and many other social advances that make us happy, the government sure as hell isn’t going to fund Fibromyalgia research.

I’m not going to get mad. It’s not that I don’t want the funding. I think it would be fabulous. We need it. We just need more discussion and education and advocacy out there and we need to do more than create silly petitions that only rile people up and don’t accomplish anything real.

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I can’t tell you how much I appreciated this post from Asperger’s: Through My Eyes. It offered insights I hadn’t realized before.

Aspergers and Lack Of Awareness of Body Signals | Aspergers: Through My Eyes.

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