Dear Paul Ryan

Dear Paul Ryan

 I am writing to implore you to be more thoughtful in your pursuits.  I can see that you are under immense pressure and possibly everyone hates you.  However if you paused and listened to constituents as people as opposed to treating them like petulant children you may find more success.  I have tried to contact you through other forms but this seems like a better idea.

I am going to take this one step at a time. Feel free to share this with colleagues. I just have a few ideas on how you can both be less despised and feel like you are making decisions you can live with. While the rest of us live as well.

1. The Federal Poverty Line.

Reassess it. 

The Federal Poverty line is too low.  As a family of 4 making 50,000 we barely make it.  We can purchase groceries, and have all basic needs met.  However we have no savings.  If for some reason my husband were injured it would have dire consequences on our lives.  We have insurance we cant actually afford to use and I have a disabled child so I dont work.  However according to the federal government, I and every other person I know that is struggling should be fine.  We aren't, please raise the federal poverty limit and consider different criteria for determining needs. The current poverty line says a family of 4 is around 24,000.  That's too low.  Raise it provide more access and people will be able to stabilize economically and do all the bootstrap pulling you think they should. 

2.  Dont Even Think About Touching Food Stamps

Too late you already did.

1/8 families in the U.S are in food insecure households.  The discount market I go to is always packed with people pawing the items for expiration dates.  People will starve to death without that program.  We will quickly stop being the land of the free and the home of the brave and instead become the land of the hungry and the home of the sick. Aslo why WIC!? What do you have against babies? 

3. Heres How that Tax Break will Actually Help Me. 

It wont.

So I see all sorts of things being thrown about on how much people will actually get back as a result of the recent tax overhaul.  Anything from 7000, to 700, with a about a million addendums in between.  Heres the thing. I dont care about taxes.  It wasn't what the people wanted, we want healthcare and President that we could meet without calling us fat or stupid or grope us.  Tax overhaul is what you wanted.  Nice job civil servant way to serve.  Anyway I am going to break down some math.  

I have commercial insurance: its about 20$ out of every check.  My children are on CHIP .  So they currently aren't paid for by my premium.  Its another 40$ premium to put my kids on insurance.  

40X4=160

160x12=2400 

My son sees a therapist twice a week. That's 2 $40 copays every week.

40x2=80

80x4=320

320x12= 3,840 

So whatever your tax plan is supposed to net my family has already hurt it by not continuing CHIP.

This is assuming that my current plan covers behavioral health, oh and vision  because my son wears glasses. My husband is a Veteran who woks 50, 60, 70 hour weeks, while I take care of my kids.  Taking them to therapy and school.  On top of that I work part time. and we somehow are going supposed to feel like burdens on the system, and think that whatever menial amount of money we get from not paying taxes is going to make up for the immense burden of paying for something we already struggle to afford, 

In the end that's $6240 more than I currently spend so the tax bill is a numberical wash at best,  as well as an actual increased burden without CHIP and also the Social Securtiy and housing threats are problems. I have never met you and you are actively taking a wrecking ball to my life. 

4. About CHIP 

Fund it. 

Dear lord and Jesus just fund the damn program. The message cannot be that there are ever forceful ploys to force women to have babies and also to force women to watch those children die.  What kind of human being even debates this program there is no reason  (unless you are working for Medicaid for all) to let it toil.  These are working parents who otherwise cant afford healthcare for their children.  Not a single argument about welfare programs can be applied and while I have a full bodied belief in social safety nets, I also just cant see what the ploy is here.  I dont want to believe that your view is to let people die. JUST GET THIS DONE!

5. Childcare

Its Expensive. 

If you cut food stamps and Medicaid and medicare and gut public housing.  Please socialize chilcare as I for one will have to take in my father and father-in-law and have to attempt to work full time in hopes that they can care for my children.  Since you hit Social Security in the tax overhaul I am assuming they wont have much to contribute in terms of monetary assistance. Public childcare would be super helpful in that regard.  Though I dont want my kids to be socialized to be Nazis so I am not all in on my faith in the federal government. 

6.  About the Nazis  

We Dont like them.

NO! Not a thing that should be happening.  The vote in the U.N., Charlottesville. Donald Trump.  All bad.  Please stop focusing on the bullshit tax scam and save the country thanks. Maybe you would feel like you didnt have to retire if you didnt also feel gross every day you let this continue.  You are the speaker of the house.  You are the leader of the House Republicans, you are an actual republican.  You can do this.  

7. Trump Appointees

Stop Confirming.

Until it is clear that Donald Trump is competent enough to appoint federal judges and White House staff please stop approving them.  Ben Carson and Betsy DeVos should not have any hands in the cookie jar. Not to mention Jared and Ivanka.  What is going on? Stop willfully appointing people who are not equipped for their jobs. 

8.  I Will End it Here

Though I could go on.

With the repeal of net neutrality, and the tax bill passing, and all the other "exciting" things you have been up to you are overlooking this huge elephant.  You can choose not to fund CHIP and still the people that were on it wont have money for it.  You can take people off of food stamps and they wont have money for food. You can take away housing and people will simply be homeless.  I know people throw around their perceptions of people receiving public programs but mostly they are hostages to the state, and taking away the services doesn't make their lives better, it leaves them sick, hungry and homeless. Why the poor.  Why is everything being defunded?  How much money do we owe Russia? My god. 

There are a million other beneficial things you can do that wont result in the killing large swathes of the American people.  Show some empathy.  Who says those poor starving people take too much those children get too sick, why dont we take everything away while we make 200,000 a year and have stable un-impacted benefits.  You could comfortably live on 100,000 or 150,000 and subsidized travel home.  Congress is stirring rage I otherwise calm people.  

Perseveration vs. Echolalia

Perseveration 

Perseveration is repetitive thoughts.  If you have ever met a person who cant stop talking about a band, or knows everything about a specific war?  What about someone who cant stop thinking and talking about a perspective or new partner?  All of these are of course beyond the typical.  We aren't talking about just the basic overly interested person either.  My son for example can weave Minecraft into literally any conversation, and explain how it fits into his view of the real world.  

Perseveration on more personal events can be challenging.  Having one negative interaction with someone can stick and come up in a festering way that makes it challenging to forgive people. For instance he had a fight with another child in the neighborhood 3 years ago and every time someone mentions that person now. He then has to talk about how they fought, and how the kid was really mean that one time.  This will go on for a long period of time. This also happens with new friends, with events such as my grandmother dying, or moving to a new house.  

Perseveration is symptomatic of autism but is also seen many other mental illness.  Namely OCD, however evidence shows that perseveration has different functions in OCD and autism.  So do not assume that because someone fixates on something and cant stop talking about it they are autistic. There are other causes of this behavior    

Here are some helpful links on perseveration. 

https://youtu.be/yUEoRK8TbJM

Echolalia 

Echolalia is essentially repetition of words.  Its similar to perseveration in its obsessive and rigid presentation its purpose is not the same.  I am now beginning to think that my sons cussing is more likely echolalia rather than perseveration.  Echolalia is a natural part of learning speech, and since children with autism tend to not learn speech as much through social interaction it is a large component to this learning.  Echolalia is way for people with autism to script their language.  The video I have connected with this is post from Amethyst does a great job explaining the purpose of this behavior. I always start with the assumption that my son doesn't want to scream obscenities at people but lacks the tools and self regulation not to. He is trying to communicate his feelings in the most effective way he knows how.

The weirdest thing is that he never babbled.  My son started speaking in sentences at around a year old.  He was mind bogglingly fast to learn things.  But over the years he has adapted his own sounds.  When he was bored he would click like Perry the Platypus, when hes excited he does this shrill sound that's somewhere between a scream and a squeak...like air brakes.  

My son will when he is stressed repeat the word B***ch until he falls asleep.  When he gets really upset he yells cuss words.  What I am beginning to see is that maybe its a stress reliever to do so.  I thought he was perseverating on the words but as I understand echolalia better I think that is what is happening instead.  Replacing the words, or explaining why people wouldn't like it doesn't seem to work.  All the tools I have to help ease his perseveration into manageable thought patterns doesn't work.   But it wouldn't right?  

Really I am sure someone will read this and ask why I am not just seeing the cussing as a behavior problem. I would say aside from his having and ASD disorder, that I don't see a difference.  Behavior problems are stemming from a response to the environment, kids and adults like to make their environment respond to them and need to relive themselves of those types of pressures. So I personally knowing my son and how embarrassing the cussing episodes are believe there is an involuntary component but also that doesn't actually matter to me in terms of dealing with the behavior.  The goal should be to restructure the environment so that he doesn't need to to yell cuss words and helping him adapt better coping mechanisms. 

Some Helpful Links on Echolalia

https://youtu.be/ome-95iHtB0

FUND CHIP

Update: I wrote this nearly a month ago.  Congress passed temporary funding for CHIP, but not permanent.

Mine and 9 million other children are on CHIP insurance plans.  CHIP was a separately funded  plan for parents who don't qualify for Medicaid but cant afford to put their children on commercial insurance.  Beyond that I could put my children on insurance and not be able to pay for them to go to any Doctor ever.  They both require specialists, therapies and inhalers.  What Congress is doing is a moral travesty.  Unfortunately as of late that doesn't seem to be what concerns them.  Congress seems incapable of making a decision based on its moral implications and more leaning toward the donors that line their pockets.    

A few states predict they will reach the end of their funds before January 1st the majority wont make it much past January.  By September the last state will be eking out the last of their funding.  There is hope in places like Colorado that the state will carry the costs, and the program can continue despite loss in federal funding.  What about places like Kentucky though?  Can places that are not thriving economically still care for the children? What will be the ultimate line drawn for Congress?  Will this be the same long haul as gun laws?  I am afraid it will as long as congress doesn't suffer they wont see it as an issue they are responsible for.  Here is a promise. My children will not suffer in silence so that the GOP can get rich and feel like rulers of the universe. What if their children were on CHIP?  Would they be dragging their feet like this?  I think not.

The thing is that a large number of children receiving Medicaid and 100% of children on CHIP come from homes with working parents.  So what's the message, you cant work hard enough for helathy children?  We only care about ourselves?  We are moving past the morally ambiguous arguments about drug addicts selling their food stamps, which I also find invalid just FYI.  We are in the realm of saying that hard working Americans are still not hard working enough to reap the benefits of their taxes.  I am angry and exhausted of opening Twitter or Facebook, or watching the news day in and day out only to see the safety nets that allowed America to be prosperous being dismantled so we can what build a wall, have tax cuts I have never heard anyone care about?

What does it say about the government that they are writing tax exemptions for owning a private jet but not willing to provide medical care for children.  I would hope that at the end of this tunnel There is a new system that is better than this one. That someone smart enough and socially conscious enough will materialize and change the game. As of now Paul Ryans statement that they are also going to roll back funding for Medicaid and Medicare, and another statement about the SNAP program,  makes this situation all the more hopeless. Its like Paul Ryan and Mitch Mconnell have no idea what people are surviving on.  My family gets by on about 3600 a month. But we don't have savings and anything less leaves us to really struggle. 

I am making it a point to bring up CHIP funding everyday.  I email Senators and Representatives, tell others to ask about it at town halls.  Tweet at various people.  I am not going to sit silently and let this just happen to me and my children and neither should you.  There is no need.  Why these programs? Why doesn't congress take a hit.  50,000 a year for 528 people is 26 million dollars.  

My last thought is that this is not and should not be a partisan issue.  The health of, children, elderly and poor is not about what political party you are in but rather what kind of person you are.  Please do the right thing.

  

Sources:

https://www.macpac.gov/wp-content/uploads/2017/03/Federal-CHIP-Funding_When-Will-States-Exhaust-Allotments.pdf

https://www.cbpp.org/research/federal-budget/policy-basics-where-do-our-federal-tax-dollars-go

Gone Girl?

*Spoilers*

I am reading Gone Girl by Gillian Flynn, and I am feeling incredibly conflicted.  Mostly I am enjoying it but I cant decide if its supposed to be ironic, or if it is overtly anti feminist.  The movie didn't help me in the least. Ben Affleck starring in it is obviously also somewhat perverse and didn't help my unease.  Watching him suck on the nipples of his mistress, and have gratuitous sex scenes that do nothing to drive the plot, and thinking about Harvey Weinstein, Ben Affleck, Bill Cosby, Kevin Spacey, etc. etc.  That just makes me feel icky. The other factor is that I know Reese Witherspoones production company made the film and it was with the intent that it was supposed to be produce strong female roles.  I just don't see it. The story is still a woman using her womanly wiles to manipulate people.

The trouble is that despite the conflicting feelings I'm having, I still liked the book. The movie was a big no, but the book was good.  Gillian Flynn has developed interesting characters, and taken a dysfunctional relationship to the extreme. Nic Dunne's internalize misogyny is on point. The thought patterns dominate the story, that Amy controlled everything, that she expected him to notice what she liked or remember the stories she told and he has justification for his inability to do those things. The inattentive man and the angry woman who cant just leave her husband despite hating him.  I just cant.

  Perhaps its only me, however who feels like the archetype of the woman deservedly scorned is dangerous. I also thought this in Mad Men.  The way Betty and Megan Draper are terrible and whiney and Don is the one cheating and lying to them. Nic Dunne is the worst and yet the story had to be written so that he was the worst because Amy was so bad.  There is valid point that they as a couple are the embodiment of consumer culture, and the depiction of the long suffering Midwest that Nic and Amy are what's left when all stuff and the house are gone.

The trouble is specifically in the current culture.  The woman who says that she has been raped, or her husband is beating her, is depicted as a liar.  Which is exactly what Amy Dunne has done in the story.  What I am conflicted about is this, is the story depicting the absurdity of women doing all these things to men. Showing how psychotic she would have to be to do them, or did Gillian Flynn use these tropes as plot device?

Am I uncomfortable with a woman being staged as a villain? This is absolutely possible. But I'm ok with Cerecei Lannister, so for now I am going to put a pin in that conflict. Do these tropes matter?  I come to the conclusion that they probably do. I don't know that a woman staging multiple rapes, domestic violence, or pregnancy, to be spiteful, even as a display of the absurdity isn't harmful to women who are actually experiencing those things. As long as the reaction is that women must be lying the making light of the absurdity will be lost on anyone who believes the latter. Women are constantly forced to accept brutalities they suffer to be weapons, don't cry rape, or he just needs help with his anger. Amy Dunne falsifying rape with the top of a wine bottle not only never needed to be depicted but, it also leads one to believe that woman would do that to herself out of revenge.

The movie never needed to happen.  It is pretty bad in my opinion.  The rhythm of Nicks inner monologue, alternating with Amy's journal entries doesn't play onto the screen, they fail to really show  the misogyny of Nick or make Amy seem as likeable as she is at the beginning of the book.  Lastly they left out all a lot of female characters that made it clear Amy was a sociopath not a scorned wife. Instead they left the part where she lied about rape and left everyone else out.

The one thing I can say is that I enjoyed the contrast of Amy the person and Amazing Amy the character.  I think its not only a gendered relevance.  Parents do this to their children frequently. We see them one way, they behave another, and then we either amend our vision of them as people, or create a delusion of them without their flaws.  Girls and women though are supposed to be perfect, they are supposed to be chaste and then marry, and then reproduce like rabbits.

Give Group a Chance?

I have been contemplating going to a support group for parents of children with autism.  The thought crosses my mind while I drive from OT, or the psychologist.  I just don't know that I want that.  I spend my time, at therapies, and consoling violent melt downs.  Going to a group and talking about how hard that is, just seems like the last thing that could help me.  Instead I go out with my friends, I listen to audio books and watch too much television. Mostly all fine, accept when I am kept up wondering about the future in ways that no one else can fathom.

First off, I am not the super together type A. soccer mom.  I feel sort of out of step with other moms. I am shy to make friends based on the sole motivation that our kids play together.  What if they stop getting along?  What if I don't get along with her, and now our kids are best friends?  Also being a chronic over thinker, makes me sort of awkward.  I mean imagine going through the process of talking to a mother about how your child told hers that he was "going to be forced to kill them" before you plan the play date.  I am both present and distant in every moment.

So today after a week in which we have had to talk to the police, and my son has been yelling obscenities at his teachers.  9 Dr. appointments, 1 trip to the ER, and a meeting at the school.  I am driving home, I am thinking about my sons future, and wondering if I am doing more harm than good. How long I can sustain this unemployed, waiting on my child lifestyle.  I am imagining my son screaming that he wants to die at his principle.  I then think of the gridlocked pained looks I get from teachers, and I think I need to go to a group.  I need to look at someone and say "I am not sure my son will ever be a fully functioning adult." and not be met with a look of sadness and "he's so smart, your doing a great job. you have to believe in him" it stings, it crushes me.

The big thing holding me back are summed up in,  it sounds so exhausting.  I am always second, or even 5th. Whether it be a dentist appointment, a job, a pair of shoes without holes, I am never #1.  A support group would be one more thing in the long list of ME things that I don't get.  My son is not like a lot of other children with autism, so it can feel like I am screaming into the void, he's not just quirky, and he's also not totally non verbal. Most of what I experience gets relegated to disciplinary arguments. "you should spank him", or something along the lines of he's just being manipulative.

All of that aside.  I have never tried, so I need to set my own tendencies aside.  I need to trust people, and not judge them so harshly.   I am going to find a support group.  I am going to go to more than one meeting.  I will be open minded.  I will resist my tendency to be cynical and judgmental.


Please comment if you have experience with support groups, please leave a comment about it. Follow on Twitter as well.

And a Happy F***ing Thanksgiving to You Too.

Its Thanksgiving.

I am so excited for the holiday, I get to spend days bonding with my sweet children, playing games and doing quaint family outings.  Establishing traditions and feeling nostalgic of my childhood.

This means I have to be fake festive and make decorations because my kids really want them, and hope that these things stave off the miserable arguments that are guaranteed to stem from one being too happy and the other being off schedule.  I am also going to try to get together with other moms to no avail only to find that I am either not that liked, or I am liked and maybe my kids are not.

The prospect that I am not ok with watching TV all day for a week was the first fight.

Waiting for turns on the computer was the second fight.

The wii sensor bar was fight # 3

Eating was fight # 4

Finally I gave up and let them watch TV.....so upcoming fight will be the TV has to be turned off.

I anticipate a "why do we have chores fight" and a "why are we too poor to go on vacation tirade"

So...I have 3 days of this 1 day of "there are too many people" and "I'm not hungry"

Then I get to spend the evening with people I don't even like with not enough alcohol, for a holiday I find very conflicting.   Since I have been a vegetarian for about 6 months now I wont enjoy the only part I like.  The leftover turkey sandwiches. I may have to give myself that because otherwise what is all this for? I mean really every bite of turkey I take makes me think about how many Native Americans died, and slavery, and Donald Trump, and all the false American symbolism.  Then I feel guilty because I love food, and I love most of my family, but I have to wonder what am I encouraging my kids to believe in?  I mean are they going to feel as cheated as I do by the legacy of lies?

Then there is also the cooking.  All the cooking that I am only mediocre at, and costs a whole week of groceries.  I thought the Puritans were poor. You mean to tell me that they were starving, they came together with all kinds of food, and fed themselves and the natives?  Yeah, sure. Now its spend almost a weeks worth of grocery money on one meal your going to share with everyone and think about how thankful you are for all that you have.  I am only moderately grateful, and I feel less grateful when I feel how one holiday cripples my budget.

This post is becoming a tirade on my anxiety about the holidays.  Just so we are all clear not everyone enjoys Thanksgiving, and not everyone has pleasant lengthy vacations with their children who are angels,  Some of us have pleasant moments sprinkled between nauseating tension. So be sure to bring good wine to dinner and don't pick fights with your politically opposing family member.

Like a Small Nuclear War

When my son was 6 and diagnosed with autism.  The Dr. told me that I would be fighting for him forever.  He said "a mild developmental disorder is like a little nuclear war" people hear high functioning or mild or any other diminutive term and think no big deal.  The reality is that it is still a very big deal. A little disability is still a disability, and a little neurological disability still impacts all the things that make a person who they are.  How the world looks, how they sense pain, and process emotions.

I have had a horrid week.  I have had appointments every day, I have had meeting with the school. I have had a police officer at the door asking about my sons outburst which I explained was a panic attack.  The officer left dumbfounded that he had been called to do a well check.  He has slept the afternoon away in school 3 days in a row. I now know its because he is spitting his anxiety medication out into water.  For goodness knows how long, long enough for him to totally fall apart that's for sure.

That little war in his brain is there when he's frustrated, or overly happy, when he is tired or hungry, sad, or feels slighted, whether real or imagined.  All those devastating misfires color his life.  Whether it be a misinterpretation of a face, or hearing a firm voice as screaming.  Even being happy is over zealous, like a shaken 2 liter spouting in your face.  He is never just your average kid, hes the smartest, or the meanest, or the funniest one.  This creates great hurdles in getting people to take me seriously, they cant picture that he might end up screaming at them or curling up in a ball on the floor.  Only why would I say that if it wasn't possibly going to happen?

When people meet him he is the most engaging child in the room.  I take him to school, or camp, or a sleep over and I say "he has autism, he has meltdowns.  He sometimes says cuss words obsessively".  I get brushed off , told how fine he will be, how smart he is. The outcome is inevitably that I get a frantic call or furtive glares as he has actually done one of the things that I had tried to tell them he would do.  When someone tells you a truth that would be hard to admit to, maybe its true, maybe its not cold cynicism but rather their unkind reality.  The consequence of thinking that parents are always excusing their child's behavior with a label is that the child is in turn held to expectations they will never be able to meet.  Time and again my attempts to take a step back form my child are devastating.

Imagine you scout out a new school, you meet with them, say my son has autism, they look at his assessments, assure you that they have all the things that are needed to meet his needs.  They show you the class room, they tell you all sorts of things that they can do for your child.  About a 2 weeks in he has a complete melt down, he attempts to run away, says inappropriate things to other students.  Does the school consider his disability valid? Do they account for it in his behavior?  Do they accommodate the behavior?  No they are, shocked, just shocked at the severity of his reaction.  The psychologist explains that he is displaying anti-social aberrant behaviors.  Just imagine how much you would want to scream! They literally look at you in awe and say "he didn't even know the name of the child that he struck"

I want to be a million other things, but I don't get to have a job, I didn't get to finish my bachelors degree.  My child has a nuclear war in his brain, with mushroom clouds, and residual radiation and a daily reshaping of the universe. It is inescapable.  All I really want is to know that someone else out there in the world is willing to accept that reality.  As he rounds the corner into being a preteen, I am beginning to be plagued by what the future looks like for our whole family.