BDC

                So, New York State wants to close Broome Developmental Center  (and the State Psychiatric Hospital).  They say its for sound reasons.  Most people around here are up in arms about it one way or the other.   I can understand everyone's concerns, BUT here's a parent's take on the idea.

                 IT SUCKS. BIG TIME.  I understand some of New York State's reasons. Not all of them mind you.  I don't believe we need to close services to our most vulnerable residents just so some company or rich a$$hole doesn't have to pay a cent in taxes.  I'm a capitalist. I don't mind people making money as long as I don't have to act as if said money is  sacred.   I especially cannot stand tax evaders.  And just because your pet lobbyist managed to convince lawmakers to make your tax evasion legal does not make it not be tax evasion.  It just makes politicians hookers.

               Now, when you say you want keep people at home and move them out of institutions, great!  I'm all for people being comfortable and safe in their own homes.  Everyone deserves that.  And we should not keep the centers open just to provide jobs.  It is not the job of the disabled to make jobs for others. But here comes the big BUT.  BUT  THEY WILL STILL NEED SERVICES, SPECIALIZED SERVICES THAT YOU HAVE NOT MADE PROVISIONS TO PROVIDE FOR.  And we do not trust you do so.  You have a long history of making promises to the vulnerable that you do not keep.  Everyone remembers the mentally ill being tossed into the streets without their medications or any help.  And now, it looks like you doing the same damn thing all over again. Only this time, you doing it to the disabled.  Including disabled children.  My child is already not receiving specialized care she needs because you have decided to be frankly, a bunch of cheap bastards.  Seriously, she was getting to the see the specialists she needed and getting the services they provide, when you took the option of taking her out of state away.   The specialists here CANNOT proivide the care she needs.  Because by the way, you will not allow it.  You will not let her get botox treatments without anesthesia.  She cannot have anesthesia without certain tests that we have not been able to get done.  And btw, she has reacted badly and gotten gravely ill due to anesthesia before.  So, in effect, you have simply made impossible for her to get the medical care she needs.  All so you can trumpet your cost saving measures.  But how much does it have to cost our children so some rich business does not have to pay a tax.  I pay my taxes. Why are they exempt?  (And don't parrot that "job creator" nonsense.  Businesses only create jobs when they have no choice. They don't want to create costs and employees are a cost for them.  If profit equaled jobs we would be awash in jobs right now.  Profits for companies are a fifty year high.  Jobs are not. Ergo, the equation is not true.)

                  And this doesn't even begin to question the services that can be only found at a BDC in the area at all.  Where are these kids going to get services like aquatherapy??  These therapies aren't games for us, its not an extracurricular activity.  These therapies are the difference between a life of dependence or independence.  How dare you take them away?!?

                    And what of the Forensics Unit at BDC?  Exactly where are they going to go?  People too dangerous and damaged to be let into the community?  Where are you going to put them? 

                   How short do you think our memories are?  I will not forget who you stood for and with when I am standing in the voting booth.  And as long as I have breath to speak for my child, you can be damn sure I not going to let anyone else forget either.

Grateful

                  I have to admit I should be better at gratitude than this especially at this time of year.   I have way too much to be thankful for to be so cranky.   Feisty Pants is not sick.  Everyone seems to be fine.  But I'm a little stressed. Usually we go out for Thanksgiving dinner, but nope not this year.  If you've never done it (and can afford it) you should go out for Thanksgiving.  Blasphemy, I know.  But, you say, what about the wondrous smells, and cheery warm kitchens and setting the table???  Bullocks.  That just tells me you are not the cook at your house.   Thanksgiving is crawling out of bed at crack of dawn to wrestle a giant carcass into a hot oven, cook like an Elizabethan servant, work your tushy off only to be rewarded by your nearest and dearest morphing into locusts like a reenactment of a biblical plague.  Bah Humturkey.  Call me a heretic but I'd rather sleep in, put on clean clothes and go out.  Besides, Thanksgiving is supposed to be about gratitude and it seems to have somehow devolved into how much can I stuff into myself before going on a giant shopping binge like some sort of hunter/gatherer on crack. 

                         Well, nothing for it then but to make it our own.  First, the turkey. OUT.   Hippie Pants is a vegetarian, Feisty Pants is basically one too. I don't like turkey. So we are having ham.  We will do Christmas Dinner twice this year.  Next, no waiting all day while kids lose patience.  We will do it at 2pm.  People seem to think that's odd. Too Bad. Works for us.  There will be a big dinner. We will all be together. It will be in the end, a lovely day.  And that's kinda the point of this post.  You have to learn what is really important and what is not when it comes to your traditions.  If you have a disabled kid you will spend enough time not fitting other's expectations.  If you keep trying to be just like everyone else, you'll just make yourself crazy. Trust me, you have enough on your plate.  Eff em.  If pizza makes you all happier than turkey, than put the cheese on in the shape of a Pilgrim Hat and call it a celebration of the tomato harvest.  We're ALL freaks in some way. Embrace it and move along. You don't have time for worrying about crap.  You will figure out which traditions really matter to you and those ones you should guard with your life.   We could give a rat's fanny about turkey and pilgrims but our Christmas tree is already up.  And Hippie Pants still dresses up on Halloween and takes her little sister trick or treating.  I have a relative who cooks a big Thanksgiving, not for the holiday itself, but the more relaxed "leftover day" (as she calls it) the next day.  She says its her favorite holiday of the year.  That's a tradition I could get into.

                           So, whatever your particular holiday tradition, I hope yours is happy. And virtually stress free.  And for the record, I am grateful.  I am grateful for my girls.  And the snow that is falling as I type.  And the fact that while I bitch about the cooking I will be doing, I have plenty to cook.  I am grateful for the creative outlet this blog gives me. I am really grateful for my new coffee maker.  And I am very grateful for all of you.  Thank you for reading. I wish you peace.

                           

Babytalk

                Okies now, something has been bugging me and I want to get it off my chest.  STOP BABYTALKING AT MY KID.   It's annoying at best and oftentimes, downright infuriating.  I know why everyone does it.  It's because Feisty Pants' speech is garbled and her face does not have a lot of the micro-expressions that animate the human face.  So, people incorrectly assume that she is not intellectually intact.  BUT, while it is human nature, it is also infantilizing and disempowering to her. So stop it already.She is going to have it hard enough finding her power, and getting others to see it by the mere facts of being disabled and a girl.  I will simply not allow the world to teach her that she should respond to it like a helpless child for the rest of her life.  We already do the world's girls a disservice with that power limiting crap already.

               So, to that end, it stops here now.  I've asked nicely a million times.  I've parroted my catchphrase matter of factly a billion times. (She's 10 years not ten months.)  It's not working.  Either you are not hearing me or you don't believe me when I say she is in there. I no longer care which.   She is now ten and should be learning to behave in more grown up ways. (Being polite even if upset.  Using her manners correctly.  Behaving even when she doesn't feel like it.  And working to change what she does not like  instead of accepting it or having a fit.)  And since I expect it of my child, I now expect it of all of you too. I don't care if you believe me.  And I don't feel the need to explain that we have lots of evidence to back up our beliefs either. Why should I have to?   Do I ask you for evidence that you are a real live grown up when we encounter you?  If I babytalked at you the way you all seem to be babytalking at her, you would think I was either rude or crazy.     You will act like a frigging grown up too, world.  You will treat others as you wish to be treated.  You will talk to her as if she were a child not a baby.  Or will have to simply understand that you are obviously not capable of logic and explain in my VERY LOUD IRRITATED MOMMY voice that you are acting like a judgemental teenager and perhaps you, world, need to stop and think about your rudeness.  Because, obviously, if we are children for the rest of lives, that is what we should expect from grown ups right???

              Sorry, I don't actually mean to seem so bitchy, but it is enraging.  How dare any of us  assume any human being is incapable of anything, until you have evidence to the contrary?  It's just one more way we try limit another's power and that is simply immoral.  And when the Universe has already limited her power in enough ways, it is simply reprehensible that we would add to those limitations.  So, enough already. Stop it.  (Oh and btw, I hate to admit it, but sometimes when she doesn't answer you, she is ignoring you. I'll work on that if you work on your rudeness.)

Holidays are here!

         It's official.  The holiday season has begun.  I know this because we spent the afternoon in an ER.  Mother always said it just wasn't Christmas until someone threw up.   (Seriously, she did. I had a sister who would get soooo excited every Christmas, she would end up sick.  Some people eat too many cookies.  My sister would OD on happiness.)  Not a big deal actually.  Feisty Pants pulled her g-tube (a tube that goes directly into her stomach through which we feed her) one too many times probably, and the balloon that keeps it in place broke.  And that usually means an automatic ER visit.  Believe it or not, she does this a lot.  Gets mad or bored and simply yanks it out and hands it to us.  Also, I think sometimes it becomes itchy and that must drive her crazy.

         So, not much else to do then, but drag Goo out of bed  (he does the night shift with FP and therefore sleeps days) at the crack of noon and schlep her and her entourage (Zippy, suction machine, various equipment, a ginormous purse and two crabby parents) to get it replaced.  The procedure itself takes less than two minutes.  The trip took four hours.  I shouldn't bitch.  Scary visits to an ER have NO wait time.  The fact that it took so long is because it was not all that urgent.  She was breathing fine, not bleeding, and wasn't trying to perform her own rendition of the Exorcist pea soup scene.   I am counting my blessings,  really.

           It's just that I hate wasting time.  I'd rather be working and getting something done.  Even if it's a tedious task. Instead, I am sitting around watching other people work and that's even more tedious.  Worse still, I am sitting around an ER waiting room that is full of sick people.  And I just KNOW at least one of them has that new form of bubonic ebola zombie virus that's about to start the apocalypse.  And I even more sure they will cough/spew/sneeze/bite on us somehow and I will have to attend the end of the world with a fever and chills.  And two whiny cranky daughters who have it too.  My only consolation is that I am merely agitated and bored.(Well, that and the gift shop at this hospital has Starbucks.) I met another parent of a feisty one.  Parents of disabled kids end up running into each other over and over again.  She's in for an abscessed tooth that has become very nasty.   She looks as good as she feels.  I am now a big whiny putz for being bored.

          Update: it's now tomorrow. Sort of.  I started writing this post last night.  And lo and behold, Feisty Pants has a tummy bug.  Don't even tell me that there is a virus running rampant through her school.  Or that if her tummy was agitated and extra acidic, it might have been what popped the balloon on her g-tube.  It's the Holiday Zombie Virus that she got from an ER, I just know it.  Some zombie sneezed on her I am sure.  Happy Holidays!

What they don't tell you...

             I was looking at Feisty Pants' wheelchair today.   Zippy's  (that's its name) one wheel is getting wonky and throwing off the alignment.  I don't steer well to begin with and that is not helping.  So now, I need to call the medical supply company and have it looked at.  We go through this a lot. We use our equipment.  You know,  like nascar drivers use cars, and so tend to be hard on all our equipment.   I don't believe in wrapping children in cotton wool and hiding them away from the universe.  Not even disabled kids, ESPECIALLY not disabled kids.   FP is, before she is anything else, a KID. She likes mud and bugs and roughhousing and loud music and (shudder) fart jokes. (I blame her father for that one.)  So, obviously we are hard on equipment.  And it's hard to roll down hills and ramps at any fun speed while yelling "No brakes. AHHHH" when the alignment is off and you have to slow down to steer.  Faking a crash is a hoot. Real ones suck. Almost as much as having to go slow. (Slow is the worst of all.  Just ask Feisty.)

              But, anywhoo, the point is that I'd like to give a few pointers on equipment.  There is something that bugs the living hell out of me concerning both medical equipment and medical advice.  You never really get any.  At least, not with any USEFUL details.  My daughter has had a wheelchair since she was three.   She spent five years scraping her ankles against the footpedals (cutting the hell out of them in the process) while we went to doctors, specialists, hospitals, three or four different medical supply companies that we deal with on a weekly basis.   And it wasn't until a teacher pointed this out- THEY HAVE FRIGGING PADDED FOOTRESTS AVAILABLE. Which her insurance happily paid for with a simple note from her doctor. What the hell?????  FIVE YEARS and not one person told us this was available.  Same thing with her now specialized head rest that does NOT bruise the hell out her shoulders everytime she tries to adjust her position in her seat.  This happens all the time and just pisses me off to no end.  I won't be upset if some rep from a company wants to upsell me.  I am very good at saying no when I need to.  But I cannot get my child something she needs if I don't know it exists.  So why don't you people tell us???  It's often the same case with medical treatments.  I went to doctor after doctor and hospital after hospital until I found one that offered me anything other than a tracheostomy for FP.  A simple tonsillectomy and adenoidectomy was all she really needed and her health improved on an exponential level without having to cut a hole in her throat and get rid of her pets.  And I would NOT even known about it had not a respiratory tech not approached me off duty to whisper in my ear.   Same thing when she was six weeks old and a doctor dismissed her as a vegetable (again a therapist approached and literally whispered in my ear "My ass, she's not in there. Go find a way to let her out")

               So, if you are new to the jungle ride of rising a kid like FP, some advice. Don't take the first answer without asking a million questions.  What alternatives are available?  What can the alternative offer?  What if I don't like the results?  What's the next step if this doesn't work?  What options can make this more comfortable? (That's a good question for both treatments and equipment.)  Who else can I talk to about this?  What is the exact name of this (treatment,procedure,medication,therapy,equipment) so I can go home and google it?  ALWAYS go home and google it.   Once you get the hang of being an informed medical consumer (or as we proudly call it, a giant pain the ass) you'll quickly learn which details to sweat and which ones to slide on.  And any doctor or equipment provider along the way who cannot appreciate that is frankly, not worth the title.

Links for toy ideas for your feisty ones.

       Well I 've decided to put in some of my favorite links to gift and toys for disabled kids.  Please note, most of these are pricey. The problem with the companies that make the specialized products is that they are used to selling to schools and hospitals.  Or, the case of some lucky kids, they are purchased through insurance programs or resource networks for the disabled.  Which means, unfortunately, that they are waaayyy overpriced.   I like to troll these sites for ideas.  Then I gleefully steal said ideas and go bargain hunting on sites like Amazon, Walmart, or Toys R Us.   Heck, I even found a few gems in dollar stores. Once you get the idea of what you are looking for, it becomes easy enough to spot the equivalent (or even the original) in discount stores.

 

Toys R Us- they have a list of recommendations for differently abled kids.

Toys R Us differently abled kids

 

Fat Brain Toys- I would go broke here.  Toys guaranteed to bring out your inner geek.  (Like we need help with this around here.)

Fat Brain Toys

 

ThinkGeek-  another geek Nirvana.   Known for their geek tee shirts but they have toys too.  Feisty Pants' very favorite sonic screwdriver penlight came from here I think. 

ThinkGeek Toys

 

Ableplay- not too pricey, but still I recommend doubling checking on prices.

Ableplay

Enabling Devices- a definite go-to site for ideas and hard to find items that will adapt other toys You can, for example, get products here that make any battery operated toy into a switch toy. ( A switch toy is one turned on by hitting a large button) You can even get devices that make anything with a plug become a switch enabled device, so you can make your lamp or radio turn on with a simple large button.  Can be pricey though.

Enabling Devices

 

Snoezelen-  This is a type of therapy using lights and textures for sensory input and brain stimulation.  The objects here are VERY pricey but is great site to make you think differently about how you approach the idea of play and toys. I like to troll here and then hit what my hubby calls the "the stoner section" of places like Spencer's Gifts or Walmart.

Snoezelen Therapy

 

           I hope this helps.  Its a very short list, but I think it can help get the idea across of what to look for gift ideas.  If you know a great store/site, put it in the comments. I'm always looking to pick the brains of others especailly when bargain hunting.   Happy hunting.

 

So what do you want for Christmas?

           So what do you want for Christmas,  little girl?   I don't know what it's like when some Santa wannabe (Santabe?) asks your kid this question, but at our house that can be a loaded question.   Feisty Pants is whip crack smart and very quirky,  so you can expect all sorts of answers to this one.  She has been known to say things like "to walk"and "a motor for Zippy."  One year she asked for dynamite.   Mostly I suspect she says things like that when she feels adults aren't taking her seriously and she knows that will shut them the heck up.  How do you respond to that??  ( Zippy, btw, is the name of her wheelchair. When she was little, new equipment made her nervous.  Naming things made them seem  like pets instead of death contraptions we were about to strap her into.)  We saw a commercial for a Furby the other day, I mentioned to Hippie Pants, that I always thought hers was creepy.  Feisty Pants has now asked her father for two furbies for Christmas.

          So, what do you get a disabled kid for Christmas or birthday, Hannukah, Easter, whatever? Other than the obvious answer of "Good God, not another teddy bear".    Often the disability partly defines the gift.  You don't get a visually impaired kid a magic eye book.  But it is hard to shop for someone like FP.   She has CP, so her body does not cooperate. If you don't spend a lot of time with her, you simply don't understand her speech.  Many people, not all of them strangers either,  think she is crying or whining, when in fact she is simply carrying on a conversation.  (I spend a lot of time telling people, "She is ten years, not ten months.)   But it's human nature to expect people to be as smart as their faces are expressive.  She does not have a lot of the  subtle expressions that animate the human face so people think she is less intellectually intact than she is.  And toy manufacturers tend to match intellectual challenge to physical development.  As a result, the toys she can physically manipulate and interact with bore her to tears.  She LOVES video games but if it takes you 30 seconds to make your thumb respond correctly to push the button, it's a little hard to play.  That leaves her simulation and strategy games.   Which makes me a little worried. She has gotten wayyyy too into Battle Realms.  I  worry I'm raising the next Bond villain. Or, perhaps on the brighter side, the next Alexander the Great. But, anywhoo...

            So, where does this leave us gift wise?  Clothes are great, but what kid lights up at fun socks from Santa?  That's more of a gift for tired parents so they don't have to schlep to the store.  We tend to cheat and go all nerd toy.  Arts and crafts, science experiments, nature stuff. FP is cortically visually impaired, so all those cool stoner "trip toys"  college kids like (you know -basically anything from the back of a Spencer's) is good. (Seriously - look up the term "Snoezelen" It's a type of sensory therapy.)  I'll try post links for Monday's post.  But what do you like to get your kid whether he is typical or special needs that is your secret go to?

Who put their lights up NOW?!?

            So, we put up our Christmas tree yesterday.   I'll take that moment of stunned silence as you comprehending the awesomeness of early Christmas cheer and NOT that you are thinking we're nuts.  I like to think of us as harbingers of yuletide joy, y'know, like a crocus in early spring. You're welcome.   Besides, the universe must have approved. We put it up last night and woke to  GLORIOUS snow on the ground.  Not enough, but just enough to frost the landscape like icing on my cake.  I willingly and gleefully with all malice aforethought, admit to being one of those freaks who LOVE winter.  I would put Jack Frost and Baba Yaga on my Christmas card list if I could.

             But seriously though, this post is actually about explaining a little of why a lot of families with disabled members seem a little wacky.  For us, the Christmas tree saga goes like this, Feisty Pants spent every Halloween and most of November in the hospital every year until she was six.  Several years she was in and out in December too.   And the last half of January.  And my birthday in February.  And usually Easter too.  (She has been discharged on Eater Sunday so many times she should get a Jesus discount on the bill.)But I digress.   Kids need and thrive on some form of routine. It gives them a sense of faith about life and the universe.  Sunday will follow Saturday, the sun will rise in the morning, Wednesday is meatloaf night, Mom will shout every time you shave the dog.  That sort of thing.  But if you never know when you will be calling the paramedics and rushing off to some ER, your routines get blown all to hell.   You learn if you need to count on getting anything from dishes to holidays done, you'd better get them done and no procrastinating.  So you learn to redefine flexibility and you adapt.   Dinner together is important, so we have to be open about the definition of dinner. To fit in around appointments and jobs, we eat one meal a day together no matter what time it is.  If that means it's brunch at 10 am or a late supper at 10 pm, so be it.  And with Christmas, well, we have had Thanksgiving dinners in hospital rooms and Ronald Mcdonald Houses, Easter in many Chinese restaurants and no batted an eye.  But no Christmas tree breaks my daughters' hearts.  And after a near miss of not having one, they called a family meeting.  So now we put our tree up the first day in November that we can all get together and do it.  Usually that means Veteran's Day- no school, no therapy appointments that day, you see. 

               And I have to admit, in my heart of hearts, while we do not do it to bug anyone, there is a tiny thrill about the defiance of being obnoxiously cheerful.  When things seem really dark and awful, and you don't have much to make you get up and put one foot in front the other, defiance will keep you moving.   When you are told that your child is "neurologically devastated" and not likely to "ever do much" , there is a part of you that has hard time not applauding when she willingly misbehaves.   When you are warned when she is six weeks old that you "need to know that you are probably taking her home to die", putting that damn tree up early anyway, while she giggles at Goo swearing at lights is an awfully fun way to give a giant christmas tree light encrusted finger to the killjoys of the universe.   You gotta learn to take your victories and joys where you find them.  Happy Holidays!  Every last darn one of them.

            Well, now, I had an interesting experience yesterday.  Hippie Pants' boyfriend comes in the house yesterday and asks who lives next door.   A lovely woman named Jan, btw.   Definitely NOT the man he saw peering into her windows.  A man wearing a shirt, sweater, socks , hiking boots, and tighty whiteys.  Notice the lack of pants?  We sure did.  He then wandered up onto my porch, I opened the door and asked him if his mom needed anything.  He waved and went back home.  (We discreetly made sure of this.  I would have simply taken him home but he is a like a deer -fast and easily spooked.) In case you, dear reader, do not live in the Southern Tier of New York, it was in the mid thirties  with snow flurries.

             See, here's the thing.  He is the son of a neighbor. And, I believe, autistic.  He exhibits the behavior I associate with an autism spectrum disorder- mostly nonverbal, no eye contact, is a bit of wanderer.  I suspect his brother has similar issues.  The wanderer in question is the more outgoing one of the two.  The mother, an older woman, is living with her sons and no help that we can see. But his not wearing pants is worrisome.   It has never happened before that I am aware of. If it's a one time aberration, hell we all have had that crazy day.  Any day that does not reduce me to wandering the neighborhood in my undies counts as a win as far I'm concerned.  I've read that mothers of autistic children have PTSD rates similar to combat veterans. I do not want to be the one who adds to her stress level if he just wandered while she  was occupied elsewhere for a minute. Or worse, embarasses her over something she cannot really help.  What's she gonna do, tie them to their seats??  Never go to the bathroom?  But maybe she needs help.   But who do you call?  They are grown men so what is the equivalent of Child Protective Services for adults?  At what point am I meddling into someone else's business? At what point am I neglecting my duty as a human being by turning a blind eye?

             So here I sit, second guessing myself from here to next Tuesday....   We did make sure he went home. (I am not a complete a-hole thankyouverymuch.)  But did I do enough?   What if next time he wanders across the street and gets hurt? (He never actually leaves our block.) Or gets lost?  Or gets picked by a cop who doesn't recognize that the guy has autism and is vulnerable? Exactly how do we help without crossing the line into judgmental meddler?  I'm a complete nerd ( honestly, a complete Poindexter with all the social skills of a nerd) so what if I am judging this all wrong?  What would you do when confronted by an otherwise harmless soul in his undies?

           Well, since I was thinking about my last post, I decided to elaborate on that theme of recommendations we don't normally think about but might come in handy if your kids is sick or disabled.  So here are a few of mine in no particular order.

          1)  Make a list of all meds, allergies, doctors, therapies etc. Also add anything you want the ER to know but may not think of at the time.  (Feisty Pants' list includes instructions about certain hospitals and which emergency procedures we will or will not consent to.) Make copies of this list. Stash them everywhere.   I put this in my last post but it bears repeating.  It is nigh on impossible to remember your last name when the paramedics are standing in your living room at 3 am.  Harder still to remember again 4 hours later when you are vainly trying to mumble it at the five hundredth medical personnel member once the adrenaline wears off. I got this idea from my friend Celtic Pants.  She once had a severe asthma attack and when the paramedic started asking questions and she couldn't get the breath to answer, she just whipped her driver's license with half of the info they wanted all neatly written down.  (Pretty ingenious for someone who couldn't even stand up straight at the moment.) 

          2) Ask all the therapists where they get their equipment, toys and games etc.  You'll end up with a good list of special needs  toy and therapy equipment specialists.    They are great sources for ideas (not the items, mind you)    THEN-search regular stores and amazon for a better price.  Toys R Us even keeps a list of recommendations for special needs kids based on age and particular special need (fine motor, cause and effect, etc) which they will send you if you request it.  Search their website to ask.  You can even find good ideas to adapt everyday things for a disabled kid at the hardware store.

           3) Can't figure out how to adapt something for your tyke?  Ask an OT (occupational therapist).  ALWAYS.  They are incredible at that sort of thing. I swear they could cobble together a space shuttle out of a rubbermaid tote and three rolls of duct tape.

           4) Lay off the stuffed animals.  Really. If you have a disabled kid, everybody on the planet will give them a cute little teddy bear at some point. Especially, if like Feisty Pants, your tyke is a girl.   It's sweet, it really is.  They see a cute vulnerable child and they have soft fuzzy feelings for them.  So they get them soft fuzzy toys.  Except, soft fuzzy toys harbor dust and dust mites and allergens. Not good for kids with asthma or imunnocompromised kids or kids with trachs or breathing issues of any kind. So they have to be washed and dried regularly.   I have literally given away hefty bags full of stuffed animals.  And we still have a bazillion floating around here.

            5) I mentioned an emergency bag in the last post, but Hippie Pants says that isn't always helpful.  ("What if you cannot grab it for some reason?")  Her tip is keep a sample of shampoo, deoodorant, tylenol and an instant coffee stick (like Via) or a teabag in your purse at all times.  She says that kept her looking like an actual human being on many an occasion.

             I am sure there are many more.  But this is what pops into my mind first. Anyone else have a great tip they'd like to share? I'd love to hear it.

Surviving Limbo

           Hospitals are psychologically strange places.  You're there because something bad, at least in a minor way if nothing else, has happened.  But you're there because it's a sanctuary for healing. One half scary and stressful for a parent, one half serene place of healing.  An odd combo of purgatory and limbo.  The hallways are like mazes (especially at night).  People tend to behave like they are churches.  We wear good clothes and try to use our grown up inside voices.

        So, how do you survive if you are in one these strange places for a while?  I thought perhaps I could pass along a few tips.  First, wear comfortable shoes.  Really.  Our instinct is dress at least business casual.  After all we want them to take us seriously.  But you're gonna be stuck wearing that outfit and those shoes allllll day. If it's your kid in the hospital, you are probably going to be sleeping in that outfit. They had better be comfortable or your day is gonna suck that much more.

            Next, make friends with the nurses.  Nurses are awesome. Seriously.  They have the most hands on time with the patients, so they always know more about your (or your kid's) case than the doctors.  And they are usually the ones who translate any jargon you don't get.  If you have any questions, ask them first.  If they don't have the answer, they usually at least know who will have the answer for you.

           Also, if you have any questions about hospital life, ask.  And know that you can always ask for a social worker. They can explain your rights and responsibilities vis-a-vis medical decisions or the bill.  They are great for things like help with accommodations or transportation if you are from out of town.  Please, note they can't score you a free place to stay. But they can tell you how to get a discount on a hotel or how to contact a Ronald McDonald House.  Or get you a discount in the hospital cafeteria.  Or where to find things like shampoo or soap or if you're really lucky where to do a load of laundry on the cheap.

            And while we are at it.  A tip I learned the hard way.  If you have a kid (or any loved one you accompany on hospital stays)  who is often hospitalized or transferred out of town, make yourself a small emergency kit. In this kit put:  a list of medications routinely taken, a list of doctors seen and their phone numbers, any therapies/ treatments used regularly, toothbrush, comb/brush, pair of socks, spare cell phone charger, one spare outfit, a small bar of soap or small bottle of shampoo, if you can a ten dollar bill or roll of quarters.  I am sure you will think of other things you want or need as you do this.  Believe me, a couple of three am ER trips and you will know all exactly what you want in that thing.  And it will make a huge difference when it's the middle of the night and/or the middle of a crisis and you cannot think straight let alone remember every specialist/medication dosage/med allergies while some one is firing questions at you.  A tiny bit of readiness makes the whole process a little less harried and makes you, the caregiver more relaxed.  Which makes the patient more relaxed.  Which makes them heal faster.  And that's better for everybody. 

Guilt

               So this one is a little hard to write.  Nonetheless, I definitely feel the need for it to be written.  I want to spend a little time talking about something that parents of disabled kids really don't talk about a lot. Guilt. Terrible, awful, nerve wracking, exhausting guilt.  I carry quite a bit.  My daughter's disability was caused by a birth injury.  What if I had gone to the hospital earlier instead of taking a shower when I was in labor?  Should I have sued when every lawyer on the planet approached me?  How much did I neglect my then teenage daughter when her sister was little and oh so fragile?  How much was I  not there for Hippie Pants when her sister was in the hospital?  How many things do I get wrong with Feisty Pants on a daily basis?  How the hell do I know when I've gotten it right?   You do the best you can and muddle along, I know.  But these thoughts creep out and bite you hard when no one is watching.

                I am writing this post for two reasons.   One, I am in a unique position.  I grew up with disabled siblings, so I have seen this festering guilt we all carry from both sides.  And for literally, all my life. It can make anyone crazy if you let it fester.  At the very least, sit with it and then move on.  Guilt is a terrible beast.  Give it the respect it deserves. And then slay it and move along.  I want to let other parents  just starting this journey know that its not only them.  We all feel it.  And it will get much, much better.  You will find a thousand ways to cope.  You will celebrate a million miracles.  One day you will start to be able to look back and think, "Damn, I lived through that?  We must be ok, then."

                 The other reason, is much more personal.  Hippie Pants is now going through her third jolting, heart stopping major life change since January.  Two of them have been awful.  In fact, this last jolt can only be called horrific.  (An awful crime has happened to close friends of hers.)  I worry that my beautiful sensitive artsy hippie daughter has just handed too much death and destruction for any 23 year old to go through intact.  And all my fears of did I throw her to the wolves emotionally, when she was a teen and I was practically living in a hospital  come flooding back hard. Have I been mother enough to prepare her for what is often a frightening and confusing world?  Damn, but guilt has sharp teeth.  I worry more she will let anger harden her gorgeous heart and make her cynical and bitter.  And so, I write this even though I am actually not all that comfortable with letting all of you peek so far into my own dark corners.  If I want her to let her beautiful dazzling heart shine like it should, maybe I have to agree to be a little vulnerable too.  And then, hope like hell she finds a thousand ways to cope without shutting herself down.  And, maybe just maybe,  I can do a little good and let other parents know they can face their own guilt too.

              I wish you all peace.

In between places

            So another Halloween has come and gone.  It was awesome. No one was sick. The kids' costumes were just the right amount of "pooky".  Feisty Pants was the cutest werewolf ever. (Don't tell her.  It will break her heart.  She knows she was absolutely terrifying.)  Hippie Pants was the correct combination of cute Little Dead Riding Hood and cartoony gross out.  (Her hanging eyeball was a huge hit with Feisty Pants)  I would love it if we were those awesome kind of parents who turn their kid's wheelchair into construction equipment or movie house props.  But, alas, we are completely happy if no one throws up in their own candy bag. The girls once went trick or treating just as they were coming down with Swine Flu.  We realized something was wrong,  when they both came home, took off their costumes, and cried from exhaustion.  (The oldest was in college at the time.)   All in all, this one was a blissful breeze.  (Only one crying jag- because Hippie Pants didn't get her make up on fast enough for her sister.)

              And so now, we are in one those in between times.  One step away from back to school and Halloween, one step before Thanksgiving and Christmas.  It's weird, being the parent of a disabled or sick child.  You find yourself finding comfort in the strangest places.  The quiet hum of a NICU where everything is hushed, including the lights.  An ER at three am, when your family is one of only a few there.  Waiting rooms of doctors and therapists first thing or last moment of their day.  Hospitals at midnight, when its just you, a few nurses, and a security guard looking for the best vending machine.  You find comfort there, because there is not much else you can do except, slow down, hold your child to try reassure yourself and them, and wait for the crisis to pass.

               Old folk tales say magic exists in the in between places.  I think there something to that idea.  And this time of year, between the back to school pumpkin spice fueled  fall and the rush to cookies and Santa, is definitely an in between place.  Its getting dark earlier.   It's cooler and quieter.   The world seems to be slowing down just a bit.   Not a ton of stuff to do this time of year, except rake up the leaves and wait for the next round of activity.   So, for all those out there in a hurry and stressed out for whatever reason, especially, for anyone with a sick or disabled kid, I wish you an in-between time.  Do what you can when you need to, and then rock them to sleep.  And simply listen to world grind along without you for a few minutes.  Even in the midst of chaos, those in between moments will sustain you.