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.