Sliding into home

         Whew... it has a crazy couple of weeks.  First we had a buttload of appointments.  Feisty Pants has a severe scoliosis and may be having surgery after the first of the year. So there were consultations and x-rays and all day long appointments to deal with.   In another city.   On the Goo's birthday.  For which the universe gifted him 48 hours without any sleep. Then there was the flu shot parade.  The flu sucks worse than the shot so off we all go every fall. Three shots, three appointments. Not a biggie but that's three day's worth of transportation and time to arrange.  Except this time, Feisty Pants -who has fluctuating muscle tone due to her CP (read that as her muscles will loosen or tighten up almost at random) tightened her legs up at random just as she was getting the shot. So it hurt.  And she cried for the next twelve hours straight.  All the way home from the doctors.  All the way to the grocery store.  All the way home.  All the way until she fell asleep that night.  If CP were a person, I would have punched it in the face.  

        Then, because it is not crazy enough, one day last week the brakes on FP's nurse's car went out.  The universe had better NOT mess with that lady. She is amazing with my child and deserves roses and chocolates and cute boyfriends NOT bad brakes on her NEW car. Or heavens forfend, an accident. Oh and Hippie Pants did not want to be left out of the chaos, so she has some awful stomach bug and/or ebola and/or the plague. We love her but she is in exile right now and will not be out of banishment until she behaves and stops being contagious.    

            I shouldn't bitch .  I really shouldn't.  These are all minor troubles and the Bataan Death March of our last couple of weeks seems to be over.  (And it sooooo unlike me to complain, I know. I know. I'm such a saint.) It's just that when you seem to live on the raw edge of your patience and nerves, it never takes much to upset the apple cart and overwhelm you.  We sleep in shifts, are sleep deprived on the best of days, and never seem to have to time to finish the everyday stuff, let alone the crazy stuff that life hands out to us all. I do not know how anyone with two feisty kids can manage it. I have one feisty one and am usually lucky to be able to find my ass with both hands and a flashlight. But, I know the crazy won't last forever.  The hectic pace of the last couple of weeks is slowing down.  The brakes were fixed. Goo got some sleep.  Tummy bugs, like all things, will pass.  Halloween will come on the weekend, so no squeezing it in around school and therapies.  Best of all, we will be turning back the clocks soon so I will have an extra hour in my weekend. (Yay, sleep!) The first two weeks of November never looked so blissfully uneventful. Our October has been like running that last mile of a marathon or hitting a triple in the last inning of a game.  Sliding into the home plate of November has rarely looked so good. 

Restraint and Seclusion (because I cannot use swear words as a title)

      This one may be a bit hard to write.  Not that I can't prattle on about damn near anything, but because it's hard to write about this subject with resorting to swear words and banging my head off the keyboard.  Both of which actions make the spellcheck/autocorrect feature lose it's little mind.  (Last time it had to be talked down from a ledge. It doesn't appreciate the way I spell swear words and guttural shrieks.)  But I want to talk about restraint and seclusion in schools. 

       Disabled children can be stubborn.  (Ok, let's be honest they make stubborn into an art form. They have to or they wouldn't survive and thrive.)   That, along with trouble in communication, often makes for sometimes erratic and uncontrolled behavior.  Having said that.  THESE ARE CHILDREN FOR F'S SAKE. We expect children in general to behave better than adults (When is the last time you were given a time out for swearing or being cross or acting selfishly, hmm????)  We seem to expect disabled children to be passive little tiny tim's with never a bad moment or cross word for anyone.  And frankly, we are all jerks for doing so.   So why oh why do we have these god awful restraint and seclusion policies for disabled children in schools?   I can understand a meltdown is hard to deal with but guess what folks, that's why we adults have all the power and money and cooler toys and no bedtimes.  We deal with the hard stuff.  I could possibly see removing a child until the meltdown is over (which by the way is NOT a temper tantrum, learn the difference or just shut up already.  You're not cool and adult when you spout mean nonsense.  You're just mean, Madame Umbridge, so pipe down.)  Disabled children are more often punished and more harshly punished than their more typical peers for the SAME infractions.  It's not about them.  It's about we adults being cruel.  So to that end New York State is investigating the use of restraint and seclusion in schools.  The following is from my local Independent Living Center's  newsletter. Much thanks to STIC for the permission to use! 

       From AccessAbility, the newsletter of the Southern Tier Independence Center :

Disability Rights New York, the official New York State Protection and Advocacy Agency for people with disabilities is investigating inappropriate use of restraints or time out rooms in schools across the state. They are seeking information on recent cases: those that occurred during the previous school year or earlier this fall. 

    If you report a case DRNY, they will help you to decide "next steps which may include accessing the school and student records or filing a complaint with NYSED, or a range of other options"  They will protect your identity if that's what you want.

     Julie Keegan, Surpervising Attorney for the developmental disabilities P&A program at DRNY, said, " Assessing what's happening or not happening in actual cases provides an important context for the survey information we collected last fall (we had over 300 responses!). I would really appreciate you help in this effort. It will make a big difference in this very problematic area of behavior invention."

Contact Julie at:

(518)432-7861 voice

(518)512-3448 TTY

(800) 993-8982 toll free

(518) 427-6561 FAX

Julie.Keegan@disabilityrightsny.org

YAY! October!

          So, yay, it's October!  And it is starting to get chilly!  And all the 'pooky shows are back to keep Feisty Pants happy. And she has decided on a relatively easy Halloween costume that won't kill us trying to make or buy. (Don't ask, it's a secret for now she says.)  So you'll have to excuse me while I snort a few lines of apple pie and pumpkin spice while digging out my ugly comfy boots and yummy sweaters and flannels.  The whole world feels like a comforting cup of chai tea right now.  As the lovely writer once put it, "I'm so glad I live in a world where there are Octobers."  And Feisty Pants isn't even too sick yet, in spite of the leaf mold beginning to burgeon and the goldenrod blooming across the street from our house.  The kids have been back to school long enough to trade germs. She has a sinus infection, but that's nothing for fall.  So the fact that FP has a minor infection and is on antibiotics really isn't that big of deal.

        So, in order to celebrate, here are some fun, octoberish things to do to while away a fun chilly spooky evening.

1) Pumpkin Stencils- what Halloween is complete without a jack'o'lantern or three or a dozen?  Here are some great sites to find a stencil.  If your kids are too little or just not able to carve, use the stencils as a paint/marker stencil.  You can even break out the old Mr. Potatohead toy and use the parts to decorate.  OH and by the way, have you guys seen the teal pumpkins yet?  Pumpkins painted teal and placed with your other jack'o'lanterns are meant to symbolize that people inside have some non-food type treats for little kids with sensory issues or food allergies.  Seems like a cool way to signal inclusion.

200+ pumpkin stencils

Better Homes and Gardens pumpkin stencils

 

Alternatively, you can just google the phrase"images + pumpkin stencils" and print whatever suits your fancy.

 

2) Fun fall crafts:  This site has loads of cute, fun craft ideas for kids.  Best of all, they are cheap and cheerful.  Have at it and have fun.

Free Kid's Fall Crafts

So there you go.:) I hope to follow this up with some fun Halloween treats but if this month stays this fabulous, we'll probably be in the backyard monkeying around with leaves, so no promises.  Happy Autumn!!!