Wednesday, February 8, 2017

No, just no

       Sigh...  I wanted to make this about cute Valentine's Day projects that aren't too babyish.  Feisty Pants is "almost fourteen harrumph" (read that with rolled eyes and your best teenage sneer) and has a boyfriend and is just too old for little kid stuff.  Except for really cute Valentines, and Hello Kitty, and puppies, and anything that makes her squee.  But every time I turn around, the world seems to want to wax the bottom of the hand basket we are going to heck in so it will slide faster.
       We have an idiot named as Secretary of Education, who seems to not understand about things like the ADA or the IDEA act or FAPE or have any effing clue about education being for EVERYONE and not just the rich.   We have a congress, full of people getting FREE health care that we pay for, determined to take away everyone else's.   We have an ignorant, sexist, racist leader who is worried more about his own power and prestige without any seeming understanding that political office is meant to be about public service, not private gain. And a gazillion jackasses following behind him who think it's now time for some weird orgy for bullying. 
            I am so done.  Seriously, stick a fork in me.   But while am waiting for that moment when I shall spontaneously combust, (and please let it be next to some d*ck who deserves to burst into flames with me...), I want to get a few things off my chest.
            1) There are NOT more and more people on SSI or disability benefits simply because they are lazy. Or are getting better at scamming the government.  If it seems that way, it's because more people with disabilities are living due to better medical care. (Feisty Pants is one of those people.)  And because better equipment means they can get out and about more. And just maybe,  because we no longer hide our disabled away in institutions and attics.  
            2)  Children with special needs are not just pampered wussies who parents mollycoddled them too much.   Autism is a difficult processing disorder. ADHD kids want to be good. A melt down is NOT a temper tantrum. And we are talking about CHILDREN, why do people expect children to be better behaved than adults?  If you honestly think that a special needs child just needs more "discipline"  (by which you simply mean punishment- not actual discipline.  Punishment is when you smack your kid. Discipline is what I use when I don't smack you.)  then you, dear reader, are an asshole. 
           3)  Disabled children grow up to be adults with talents and skills and value all their own.  How dare you expect my daughter's education to be a glorified daycare?!  How dare you expect her to not have access to health care as good as anyone else's?!  How dare you not allow her to dream big, have ambitions, contribute to society, and make the world a hell of a lot better then this mess we have apparently created?!    
            I grew up with disabled siblings.  Children of my older sister's generation were usually shuttered away in horrible, overcrowded institutions where they were neglected at best.  My parents had to sue the state they lived in to assert my sister's constitutional right to an education.  When my parents wanted to adopt, they were told they would have to institutionalize my older siblings because it was too hard for my family or no adoptions. (My folks very rightly told them to buzz off.  Ended up with two adoptions anyway. ) They, along with so many others, fought daily for every inch of progress made for kid's like Feisty Pants to have a decent shot and a fair start.
            So, for my folks, who fought so hard.  For my sister who never was given the chances she should have had.  For my brother.  And most definitely for Feisty Pants.  We will not go quietly back into the dark ages of disabled rights.  We will not go quietly back into institutions and back bedrooms and quiet poverty. We will not go back.   And if I have to, I will gladly spontaneously combust and take all you d*cks with me. 

Monday, January 23, 2017


              Well, dear readers, I've said this many times before but now I feel the need to say it again LOUDER.  The Affordable Care Act is important and valuable. It improves and saves lives. Is it perfect? NO.  But it beats what we had before by a mile.  Perfect,  by the way, would be nationalized medical care.  Medicare for all would fit that bill nicely.   Do not hand me any nonsense about the government taking care of us.  That is EXACTLY what they are supposed to do. That is exactly what we pay them for. We all put in our dollar and the roads get paved, fires get put out, schools get built. The public good is government's only function.  Otherwise, what purpose does it serve?  We are a democracy, not some feudal system where all benefits trickle up to the nobility.
              But for those of you who may not understand what good Obamacare serves, let me explain.  First, everyone deserves health care.  It is a right, not a privilege.   If you think there are human beings out there who do NOT deserve health care, then your soul is crippled and you need professional help. Which would be covered under a good health care plan.   Second, eliminating pre-existing conditions is a life saver. The idea of them is frankly, offensive.    Life time caps are also offensive.  How dare any company put a monetary limit on human life?!?  (Stop being bloodsucking vampires feeding off human illness and pain. )
              Eliminating pre-existing conditions meant that my daughter, who is disabled due to a birth injury, could grow up and get a career, pay taxes, and do all those things that someone doomed to poverty could not.  Feisty Pants would not be stuck with medicaid forever because private insurance would never cover her.   She will need life time medical care to simply live, not thrive, not succeed, LIVE.  Eliminating life time caps means no one could pull the rug out from under her and take away the things her insurance pays for like durable medical equipment, expensive formulas, medications that keep her alive.   Repeal Obamacare and she is stuck under the poverty limit for life.  And I never, ever want to hear one more supposed decent human being then complain about people not picking themselves up by the bootstraps.  They cannot do so when you have stolen their boots and cut off their feet, you selfish jerks.
             It will also be much more expensive for society in the long run. People who cannot get a simple antibiotic end up in hospitals with major infections.   It's cheaper to pay about 100 bucks for a simple doctor visit and an antibiotic than a $4,000 er visit.  Or a $50,000 hospital stay. And the people who cannot afford to pay for doctors are usually the people who cannot afford a day from work, so have fun while they cough on your groceries, fast food, restaurant dishes, toilets, etc., because they are working while sick.  Oh, and cutting back on services for kids like mine mean she will need to be hospitalized more, so there goes everybody's taxes up more because her care is VERY expensive when we cannot keep on top of her continuing health care needs and private insurance will not cover her because you know, Obamacare was so terrible.
                Oh, and don't complain to me about the premiums under Obamacare. The government did not set those premiums.  Greedy private insurance companies did. Aetna raised their rates precisely because the federal government would not approve a monopolistic merger they wanted.  The rest of the companies did so because Aetna got away with it.  But private insurance companies just have your best interests at heart, so let's go back to that shall we?  I'm so sure the premiums will go down when no one is there to restrain them.
                  I really don't want to hear you complain about taxes and the insurance fine either.  Taxes are NOT theft. You get a million benefits for those taxes.  Paved roads. Firemen. The police.  The frigging US military.  A massive amount of medical research. All the fun science we got from NASA that was put to daily use. Snow plows.  Taxes paid for modern civilization. You wanna go back to living in a hovel without central heat and public sewers?  Have fun.  Personally, I like the internet and not having cholera.   Oh, and by the way, you are required by law to have insurance on your car.  And prove that it is safe to drive.  Or else  many places take away the right to drive it in public.  Or fine you. Some places even take the car.   And you know what? It might be inconvenient at times, but it makes the rest of us safer so there's no giant outcry of how dare the government make the roads safe. Suck it up and pay your damn bills, including health insurance.  Really don't think you should have to?  Maybe you ought to rethink that whole national healthcare thing then, it might actually be cheaper on top of being better for us all.


Monday, January 9, 2017

Self Care for Cold Season

                 Well now, here in Feisty Pantslandia (The Democractic Republic of Feist? First Imperial Feistopia? Pantsgri-la? anywhoo, I'll stop now...)  we have been battling colds since school started, or time began, I don't remember which now. It seems like we just get over one bout of sneezing and aching and complaining and right away, here comes one of the first ones to have had it all snotty and wheezing and achy, again. Sigh. I blame all you touchy feely, happy, affectionate wierdos out there.  Honestly, I am going install a high tech airlock that sprays everyone with purell and lavender oil on my front door any day now.   May not work but everyone will least at smell great.  You're welcome.
                 But until I win the lottery or figure out to diy my own biosphere, I guess we will have to continue battling the season of colds and flu. (The flu, especially, is said to be bad here in NYS this season.) So I thought I would write down a few self care tips to help anyone else stuck in this snotty handkerchief of a January.  Anything to make us all a little more comfortable right now.
1) Ginger, ginger, ginger.- Seriously.  Ginger tea with lemon and honey is really good for throat and sinuses.  It soothes and coats the throat and is also great for troubled tummies. (The reason why everyone drinks ginger ale when they're sick is for the ginger.) Candied ginger especially is proof that the Universe loves us as far as I am concerned.  It's warming, soothing, helps with coughs.  There is even some evidence that ginger will boost your immune system.
2) Homemade vapor rub- Vicks or Dr Unker's are fine but this is all natural  and you can adjust the scent to your liking.
You will need:
1/4 cup olive oil
1 to 2 TBS grated beeswax
5-10 drops eucalyptus essential oil
5-10 drops peppermint essential oil
5-10 drops tea tree oil
10 drops lavender essential oil (optional)
Melt the olive oil and beeswax in a glass jar (I stick things like this in a small glass jar and put the jar in hot water) Stir in essential oils. 
   extra tip- My mother and aunts swore by slathering this on your feet last thing at night, putting on thick socks and going to bed at the first sign of a cold.  Can't say it works for sure, but it's an old wives tale sworn to by a bunch of old wives.
3)Try putting a few drops of peppermint oil or eucalyptus oil in the tub.  You could even throw in a half cup or so of epsom salts  to make it even more soothing. (The magnesium is great for the muscles)  Soak, relax, let the steam open your kid's sinuses (or yours).
4) Don't forget the chicken soup!  Or bone broth.  Or veggie broth for the veg heads like Hippie Pants. Hot broth with a touch of protein and fat works wonders in healing and soothing. 
                  So there ya go.  Just rest and take it easy. I'm sure we will all better in no time. If you need me or Feisty Pants, just text us.  I'm not touching any of you germy buggers until I'm sure you don't have the plague.

Monday, January 2, 2017

To the other parents who have been there

               So I have totally been procrastinating everything and sulking about the universe since November.  It seems like the world is devolving into a Lord of the Flies bully fest where jerk offs are rewarded and everyone else is labeled as prey or foolish. But you know what? Enough. I'm done.  I cannot make the world dance to my drumbeat even if it is the coolest, most awesomest, peace, love, and granola drumbeat you'll ever get to hear. And all my pouting isn't gonna do a thing except bug those I care about and eventually cause me to get on my own nerves. Which I have. Right about this weekend.
               Feisty Pants had a crappy weekend. (Ten people went to my folks for Christmas.  Five now are battling a hideous cold  known as the plague that won't quit.) We spent Friday night at a walk in clinic and Saturday at an ER. She's fine now but it's soul wearying to spend days in a hospital setting when you are not working there and therefore are simply in an enforced waiting period; especially with Feisty Pants, who is a complex patient, and whose every hiccup makes doctors have three intense, whispered conversations with each other about what it means.
                So, now, enough.  I'm tired and crabby.  All my whining is getting on my own nerves. I'm putting my attitude into time out and it's not welcome back until it knows how to behave in public. Which brings me to my point. Action of some kind is what usually snaps me out of a funk.  I was reading this morning about an actress whose infant son had a skull fracture and this scared the hell out of said actress. It was hard when FP was born and we sat, terrified and gobsmacked, waiting for the next doctor/nurse/therapist/specialist/witchdoctor/priest to come around and spout an entire medical text of jargon and scary what ifs and what could bes at us, and we were expecting terrible news due to her birth injury. And I grew up with disabled siblings so I never had to have that heart broken "but it only happens to other people" moment.  I can only imagine what it's what like for a parent whose trauma literally comes out of nowhere. There must be something we can do to help a bit more for the parent first stumbling down this road.
                  Soooooo, I got up this morning and looked at my safety pin on my coat and had a thought.   I know there a million therapy groups and online sites and facebook groups.  But I was never one for too many group anythings. (Honestly I was always a Wednesday Addams in a world of normals...) Isn't there something we can all do, like a safety pin but different, to let the next parent just falling out of bed and stumbling down this road know we are least good for a few pieces of advice, a cup of coffee or at least a safe ear to spout at???  Something that's totally informal and simply says, "We've been where you are and it's cool to approach us."  What do you think? Any ideas?

Thursday, December 15, 2016

Holidaze, take one

               Okies now, so I totally have not been pouting and worrying about the election (Fascism can be fun!) and I certainly have not been procrastinating, like, at all. I swear.   It's mostly that we have just been crazy busy.  Dragging Feisty Pants to sleep studies, and doctors appointments.  ( The latest cold has turned into three doctor's appointments and two rounds of antibiotics.)    Then there is Christmas gifts to make and buy.  Cookies and baking and all those fun chemistry accidents we like to call cooking around here.  And real live snow days with snow and everything. And planning a trip to my folks. And beginning arrangements for the next trip to Philly for the next round of tests for Feisty Pants' upcoming scoli surgery.  And Feisty Pants has discovered her no longer hidden talent for talking smack so we all have to drop everything and watch football so she describe the game to us.  ("Look at da score Goo- you LOSIN'!!!")  And a few Christmas parties already.  And, yes, right on cue someone did throw up and end up in an ER- so it is officially the holidays now!
               So, before we get too frenzied, or too fed up and actually start the revolution, I thought would take a moment and make a post or two about something normal like being a parent or fun things for kids to make for the holidays.  In no particular order- here a few fun crafts to make with the kids.  They are fun and cute and just might make good gifts for the grandparents or aunties or whoever is still left to cross off the list.
1) Sugar hand scrub-  you will need  a small fancy jar  about 8 oz (mason or otherwise), 3/4 cup (or so) sugar, 1/4 cup olive oil, enough liquid soap to fill jar (I would use liquid castile -think Dr. Bronners, but really any would do) Essential oil in any scent you like (optional)
Pour the sugar into the jar. Add the olive oil. Stir carefully.  Top off with liquid soap. Add 15 to 20 drops essential oil.   Stir again.   Add a cute tag and ribbon.  Easy peasy- and very charming.
2) Peppermint ornaments-  you will need peppermint candies, alumnium foil,  ornament hooks or paperclips, ribbon or twine.  (This one needs adult supervision- or a dad- either way)
    Line a cookie sheet with foil.  Unwrap candies and place close together in a design you like (stars, flowers, wreath, homunculus glob, whatevs).
Bake at 325 degrees for about five minutes (maybe longer but start checking on them then)  When the candies have melted together but still mostly retain their shape., it's time to take them out.   Allow to cool.  While still soft (here comes the really adult part) insert the hook partially into the candy to form a hook or loop from which to hang.  Hang with the ribbon or twine when totally cooled.  Looks adorable.  Smells like Christmas!
3)Bubble bath paint- you will need an empty paint container (like the kind you get in a kids art set) or small empty jars (baby food jars might work),castile soap (or clear baby shampoo), cornstarch, food coloring.
  Note- there's not a lot measuring here.  It all depends on much you make, so start slow and eyeball it.
         Place the soap in a mixing dish- (enough for all the colors) Add cornstarch about a TBS at a time and stir very well.  When it feels like the right texture for paint(think craft paint) you're done.  Place into individual containers and stir in food coloring until you get the color you want.  
         Happy crafting!


Tuesday, November 29, 2016

French Fries

          Soooo, here I sit in one of the Ronald  MacDonald Houses of Philadelphia.  There are four in the greater Philly area.  We have stayed in three so far.   They are truly a hallmark of civilized society.  Being sent to a far away hospital is never fun, even when it's merely for testing like this. It is an amazing comfort to find a real bed in a quiet, safe place after a chaotic, stress filled hospital day. Every time I think Micky D's  is an awful fat filled institution, I remember the RM Houses and stick a damn french fry in my mouth and shut my fry hole. Anytime you want to feel truly noble, donate your time or even some money to a such a place. Even if you never hear it,  I guarantee some tired, stressed out family will be singing your praises.
          Goo and I brought Feisty Pants down to St Christopher's to see a pulmonologist and get pulmonary clearance for her upcoming scoliosis surgery. (We have several clearance hurdles to cross.) Getting said clearance involves getting a sleep study done.  We have been down this road three times before.  It's a twelve hour test. We are lucky if we make to hour eight because Feisty Pants is called Feisty Pants for a reason. She is very. well, feisty .  She usually spends her time during a sleep study by continually ripping off all  the leads and throwing them at us.  While proclaiming to all and sundry how much she disapproves of sleep studies.   I did the last three.  This time it's Goo's turn.  (They usually only let one parent stay for the test.)  So here I sit by myself in RMH.  It's weird to be myself, ever.   Goo suspects I am partying it up, reveling in the aloneness.  In truth, I find myself  at a loose end and bored with my own company.  If I were at home, I could clean and finish my gazillion emails, or at least play with the dog and pretend to clean, but here I guess I will write a few posts and, I hope, catch up on my sleep. But the enforced idleness makes me a bit anxious.  In truth, I spend so much time being Feisty Pants' mom first and foremost, that I don't really know how to deal with myself when I am not.

Sent via the Samsung GALAXY S® 5, an AT&T 4G LTE smartphone

Wednesday, November 9, 2016

W. T. F.

                    I wanted to make this post about the loveliness of November.  I even had it half written. I wrote about how the end of daylight savings makes me happy.  I wrote about how wet, windy, dismal weather is one of my happy places.  I wrote about how November is one the Universe's grand in between times that gives solace and refreshes the spirit of a tired, busy soul.  I wanted to wax rhapsodic about how the closing in of cold weather makes us all appreciate our loved ones more and naturally draws us all closer together.   But I can't, because somehow there is a CANCER IN THE AMERICAN SOUL AND WTF IS WRONG WITH US?!?!? 
                      Why the hell did we go and elect Mussolini 2.0?!?    This isn't a conservative/liberal argument.   There were plenty of conservatives to pick from.  We could have gone with any of them.   They had experience and education and all the hard ass bonafides (defund Planned Parenthood, no to the Dream act, lower taxes, etc. ) that any right wing pundit could love.   This isn't an antiestablishment argument.   Bernie Sanders was right there in the wings allowing any person with a populist bent to Feel the Bern and stick to the man- with grace and dignity and class.   Why the hell did we go for the a-hole who is a bully and anti-female, anti-immigrant, classist, and racist, and frankly, tacky besides?  At best, he is a bullying narcissist.   Quite possibly he is in the pay of foreign goverments. Quite definitely he is a thin skinned con artist.
                       And why, dear reader, you may ask am I harping on this in a blog about raising a disabled child??  Because of this- my child is among the most vulnerable in society.   People think that the disabled are not preyed upon by so called good people, but they are . EVERY DAY.  It happens when some jerk acts like my kid doesn't need the accommodations that he refers to as"special privileges".  It happens when some supposedly respectable citizen complains that they shouldn't have to pay taxes to "take care of her" as if they don't benefit from taxes I pay every day.   It happens when some bureaucrat tells me they cannot pay for necessary medications or doctors because there is not enough money in the budget meanwhile cutting taxes AGAIN for some wealthy a-hole.  
                       Most of all, it happens when the evil starts creeping in, slowly at first, when those in charge start muttering about the "takers" in society.   When supposedly decent human beings talk about "those people who just aren't like us".  When people continually confuse obedience with morals or ethics.  Or confuse flag waving with real honest patriotism.    If it is not stopped, it ends with discrimination becoming legal.  With those in need first starved financially of needed services.  Then just starved period.  All while supposedly "good citizens" turn a blind eye and a cold heart.

                        It may not come to this.  I hope it doesn't.  But it so easily could.  I am scared.  I am very angry.  And make no mistake.  To quote the Texas republican, "There is no honor in being a good Nazi." I am scared that not only is my child's way of life at stake. I am scared her very life could be at stake.   This is my CHILD. I will go down swinging.  The zombies are rising. I am tripping everybody.