That most wonderful time of the year

                If you are the parent of a special needs child, it's about to be that crazy time of year again.  No, not spring, when a young feisty one's thoughts turn lovingly to mud and bugs and the great outdoors.  Not even allergy and mold season, when antihistamine maker's minds turn lovingly to their bank accounts.  (Although it is that time too.)  Nope, for parents and educators is that head spinning business known as IEP season. (Cue roll of thunder and ominous music.)

                For, the uninitiated,  an IEP is an Individual Education Plan.  That's the document that lists exactly what a child with special educational needs will be expecting and getting in the next school year.  It is a legally binding contract that states the goals for the student, how they will attempt to meet these goals, how they will assess progress, what progress has been made to date, and what supports will be needed and provided for.  And because it is legal contract, it is taken VERY seriously by all parties involved -or at least darn well should be.  In  difficult circumstances, it is an emotionally grinding grudge match were all the adults have to smile and try very hard to use their best polite company manners and make sure the child's needs can be somewhat met.  In great circumstances, it's a brainstorming free for all where everyone is still working extremely hard to ensure a good outcome for the student.  I've been present at both kinds of meetings, and while I am pleased to say that most have been the latter kind, it's still a serious mental workout.   Feisty Pants is in a fabulous educational setting right now, so they go out their way to try have as much of the work before hand as can be and it still seems like we always leave something undone that we end up going back to fix later.

                   So, to that end, I am posting the following links that help explain and give some tips on getting through the IEP process.  Good luck and godspeed.

                     

                    IEP-  this is the wikipedia page on IEP's.  A good starting point for beginners.

                    IEP-wikipedia 

 

                    What is an IEP?- article from the National Center for Learning Disabilities. Another good   starting point.

                     What is an IEP                    

 

                    IEP faqs- Wrightslaw's faq page.  A good place to start to really dig into the heart of this issue.

It's worth your time to really check out this site for advocacy tips in general.

                     Wrightslaw faqs

                    

                      Six things you may not know about the IEP- great article that quotes exact regulations covering the IEP.  This is from the National Dissemination Center for Children With Disabilities.  Unfortunately, they have been defunded. (Cheap ba#$@^&) and this page is only available until September 2014. Print this one out if you can.

                       Six things you may not know                     

                     Playing 20 questions with the devil.- GREAT article on handling disagreements during the IEP process without losing your temper or sanity.

                     How to handle disagreements

    

 

                    I hope this helps anyone struggling with advocating for your child.  I would also recommend bring coffee for yourself (sip everytime you want to swear or have to wait)donuts or cookies for the group (buttering people up always helps ANY meeting), and personally, I always try to Feisty Pants herself.  She's cute and charming and hard to say to no to.   Yes, I know I have no scruples.  I just think that's a virtue.

 

After the ball

            Well, now, the party is over and done.  Feisty Pants both left and returned in high spirits. She had her nails done- silver and purple because she didn't have anything sparklier (and you don't EVER want to exactly match your silver and green toenails.  Too matchy, duh.)  She had  her rhinestone studded jeans. She had her boots (DAFO's actually) with the skulls on them.  She had her gifts for her hosts.  And, mostest, bestest of all, NO annoying parents.  Honestly, you would have though she'd just been paroled.  Or to be more exact, furloughed.

            Feisty Pants came home giggling and laughing to report that she had tried pineapple and chicken pizza (which was awesome!!) and the lemonade (disappointing because it tasted just like Goo's lemonade- it wasn't different at all - Go ahead, YOU try to explain that lemonade is its own flavor.) She did NOT pinch anyone.  She did NOT escape from her car seat. She says she said thank you when she left.  When asked if she had smooched anybody, she looked at her father and said "maybe a little" and then laughed so hard she almost choked.

            And so now, Spinderella has the party's over blues.  We never do anything fun.  We never go anywhere ever.  We are the most boringest people to ever annoy a preteen girl and what did she do in a past life to deserve us???? This house sucks.  I can absolutely hear her mental eye roll at the prospect of being stuck spending time with us for the rest of the weekend.  At least until Walking Dead comes on because ZOMBIES.  In other words, she is now acting like a typical ten year old girl.

             And so, now it's my turn.  Thank you, incredibly sweet parents who allowed my kid to invade your house like it was a beach in France (with equipment and medico in tow).  Thank you , Jane and Wanda and Hope for being awesome nurses everyday, but especially for arranging for my kid to have this sweet victory over the tyranny of boring parents everywhere.  Thank you Universe, for letting her not be sick, for letting the weather not be too bad, for allowing her to achieve her heart's fondest wish of completely ditching us for some pizza with some cute boys from school.  This definitely goes down as a win as far she is concerned.  Thank you all for that.

              

Party on

                  Feisty Pants has hit a milestone this week.  She is going to go to her first event WITHOUT a parent.  It's the birthday party of a classmate and her nurse has kindly offered to take her.  All the kids and nurses are apparently going. FP attends a school within a school, so it's a small class.  Still, there will be a small herd of 10 year olds with wheelchairs and various medical equipment and nurses to accompany it all.  I don't know if the parents of the classmate has other kids, but they do have twin boys with special needs.  And, bless their slightly masochistic hearts, they are now inviting the whole class over for an afternoon.      

                 I have, in good conscience, warned the nurse. Feisty Pants is a houdini with a car seat.   For a kid who cannot walk or even swallow properly, she knows a thousand ways to escape from ANYTHING.   Car seats are a particular specialty of hers.   I suspect though that she will be an angel for this ride.  She has been looking forward to doing something "out OU, Ummy"     (without you, Mommy- said with her absolute best ten year old girl sneer) since the day she was born, according to her.     I, apparently, cramp her style.  Goo is almost as bad, but at least will let her get away with more.   And, I am not worried for her, her nurse is awesome will take good care of her.  No, I am worried about how she will behave without me.  She is quick to take advantage of someone thinking she is incapable of misbehavior.   She is small and cute and in a wheelchair, so if she looks sad or smiles prettily, people let her get away with all sorts of crap.  She is very, very aware of this.  Even if you are not. Especially if you are not.  Hopefully, going with people who know her very well should curb that tendency.

                To that end, she has picked out her favorite sparkly jeans and an awesome t-shirt.  She has instructed her assistants (us) to go fetch birthday presents with "cars on them".  She listened carefully to the rules. No pinching, no escaping, no smooching on boys.  (She actually told her father "nuh-uh, no telling" on that last rule. FP's way of saying "you ain't the boss of me.")  She has informed Hippie Pants that she has to come over and paint her nails before Saturday.  Because she has PLANS.  Plans that finally don't involve those annoying, ever present pains in the butt couple of old farts she is stuck dealing with all the time.   I guess I should be nervous letting my kid go out to the world without me. I am. A little. Mostly for the world though.  They don't know what's about to hit them.   Good luck World. Here she comes.

Doggone it

                   Ok, shhhh, don't tell Feisty Pants but we are working on getting her a new puppy.  We've had dogs longer than we've had Feisty Pants so she has always had them.  But both of ours died with in the last year.  (Old age mostly- one simply went in her sleep and the second's health went downhill immediately after that.  They were both 14 years old.) Pets in general, and dogs in particular, teach us amazing things about love and empathy and living in the moment and generosity of spirit.   I don't remember off-hand which philosopher said that "until we love an animal a part of one's soul remains unawakened" but they were damn well right.  And I know FP has lung issues.  I don't care.  She is NOT allergic to dogs or cats, so we are going to go right on having them.

                    And, I also know that pets come with a built in expiration date.  It's hard and traumatic and awful to love them so much and then let them go.  It's even worse that they love us a thousand-fold more than we usually deserve and then we have to let them go.  But it is so much worth it that we are about to take that ride again.  I think, perhaps, that that's the biggest lesson they give us.  That love - real honest love- is worth the ride no matter how many times the ride must end.  That the dance may stop but the music plays forever.

                    Feisty Pants has been begging for a dog anyway.  Every Animal Planet  tv show (and we watch Animal Planet a LOT), dog food commercial, every neighbor out walking their dog, reminds her of what has been missing from our family since last spring.  She alternates between her mantra of "Ummy, want a dog, Ummy. Now." and "Don't worry, the ellow (yellow) dog is coming." ( Don't ask me. I have no idea, either.) So when my sister in law texted me last week that she knows someone looking for good homes for boxer mix puppies, we said yes. They should be ready for homes right around Feisty Pants'  birthday.  I said we prefer female but would take any friendly dog she(my sister in law) thought suitable.  I figure if the Universe is throwing me a curve ball of a puppy right out of the blue, we should be flexible enough to accept whatever form it comes in.

                    So we are slowly sneaking in puppy chow.  And washing up all the old dog toys and bowls and leashes from our other dogs.  And finding a few blankets to hand down to the new family member, in case this does work out.  And picking out fun names.  Don't ask, I'm too superstitious to tell you yet.  They will all be nerdtastic, anyway.  We haven't officially told Feisty Pants, in case it doesn't.  But I doubt it will be a complete surprise.  And if the puppy does get here and turn out to be "ellow", I am changing Feisty Pants' name to either Matilda or Kreskin.  So, do me favor.  Keep your fingers crossed for us and think a few good thoughts our way, puppy wise.  Just not too loud, or Kreskin might hear you.

A Captive Audience

                  We are on day two of a five day weekend.  Or as Feisty Pants calls it, her second day of captivity.  She is getting over a minor cold.  No biggie really, but it does mean she can't go outside.   Where everybody else in the whole freaking universe is apparently attending a weekend long Valentine's Day snowstravaganza.  She knows this.   And I am the meanest evilest mom EVER for not allowing to take part.   Just ask her.   And all of her toys suck.   And those people outside are NOT just shoveling out sidewalks and driveways.  They are having FUNNNNN.  And, no, she does not want to do "anyfink at all"  with me.   I might taint her with my evil.  Why, if it wasn't for some nature special on spider babies that eat their mother she would have run away from home hours ago.

                   And who cares if Hippie Pants is coming over tomorrow to spend the morning with her.   That's a million years from now.  Or that her aunt and uncle will be visiting sometime over the weekend.   Or that we will make ice cream.   Or that there will be a new monster special on later.  Batsquatch sounds promising, but  all of that is a million billion years into the future and she will have succumbed to terminal ennui by then.   And I better not even THINK of trying to cheat and jolly her into a better mood with music.  She has sinus headache and music is "ucky" because it makes her head ooooie right now.

               And so,  today's post  is about something no one tells you. But if you are just beginning this journey of raising a disabled child,  really someone should.  Disabled children can be a stubborn pain in the ass. Anyone can be, be it seems to be a specialty of theirs.  I have  a whole theory on this.  A lot of times what keeps anyone going through any type of crisis is sheer obstinacy  And personality traits are like muscles.  The more you exercise them, the stronger they get.  This is not a bad thing.  It is what makes humans brilliant and adaptable.  We muddle through all sorts of problems and catastrophes simply because we refuse to give up.  We just keep on plugging away at it, until by design or sheer luck, we figure it out. Disabled kids, especially ones who are sick a lot need this trait.  Otherwise they simply would not make it through a lot of their illnesses and setbacks.  They would not survive. So, the trait that makes me thank the stars above when we get through the scary ambulance ride or not breathing episode is stubborness. What lets Feisty Pants get up and try to control her body and navigate her world  when its really frigging hard and often painful is a stubborn refusal to give in.  What makes us applaud her and do "I'm proud of you dance" for her is what makes her the biggest PIA  when she is whiny and bored.  And you will feel like a an awful parent if it gets on your nerves somedays.  Which it will.   So, take a deep breath and cut yourself some slack.  This too shall pass, I promise.  And its only 6 more hours to batsquatch.  At least, she isn't a spiderlet with a hundred siblings all wanting lunch.

We need to change the script.

         Today, someone mentioned to me that New York is in a fiscal crisis.  They meant well, but they were mistaken.  They were repeating what someone from medicaid has told them repeatedly. The state workers repeat that to parents ad nauseum.  They do that because it shuts us up.  Makes us sound like "takers"  and "moochers" just trying to game the system for our kids.  Except for a few things.  One- we are tax payers too.  Whether or not you own a business (We used to and we paid taxes at an incredible rate compared to our take home pay.) or property (we pay taxes on our home and even if you rent, your money is going towards property taxes- landlords are not known for renting as a form of charity.), there are sales taxes, fees, fines and tariffs of all kinds.   We all pay taxes.  Unless you are a corporation over a certain size or a millionaire.  Then your chances of paying taxes are almost nil.  I am not kidding, look it up.  I'll wait here.

              The other problem is this. NEW YORK IS NO LONGER IN A FISCAL CRISIS.  They have a two billion dollar surplus.  TWO. BILLION. DOLLARS.    That's where Governor Cuomo wants to get the money to pay for the property tax caps he has been touting lately.  There are those who say this idea is heavily skewed in favor of downstate. There are those who say it higly benefits the more well to do.  Both are good points and we should be discussing them.  But I want to completely ignore that for a minute.  I want to talk about why they keep repeating 2008's news. Why is the state acting as if we are two steps away from bankruptcy?  Why are they repeating what is simply not true?   Are they not paying attention to their own finances?  Or is it a way to keep us from demanding more? Is it a way to keep us from expecting better for our own money?  Anytime anyone ever wants you to be fearful of anything, it is because they want to control you.  It's offensive and I for one, am no longer buying it.  Others may choose to dwell in fear.  But we parents of disabled kid live with bigger boogeyman on a daily basis.  So, do me a favor, everytime someone tells you the state is in a crisis, ask them to prove it.  Tell them you want to see the books.  It's YOUR tax money after all, ask for proof.

            And, while we are at it.  Ask the businesses who are getting sweetheart tax breaks, to pony up the jobs they are claiming to be creating.   I have new idea, no new jobs? No new tax breaks.  Let's start a real discussion on who has a sense of entitlement.  You know why executives think that the average person is a taker with a giant sense of entitlement? Because they have a giant sense of entitlement. You see, tax breaks are based on the idea that the public gets a benefit in exchange for the reduced taxes.  Jobs would be a benefit, so we allow them the break   Fake jobs are a con.  Demand proof of what you are already paying for.

         And, the idea of helping out children, disabled or otherwise is because we benefit as a society from that investment.  Better education=more opportunities =more stable society=less crime.  More opportunites= better advancement in science, medicine,law,technology= better life for all of us.  We all do better when we ALL do better.  We are not educating and feeding children because we are NICE.  That would be cool.  But it's just not true. We do it because we want to benefit from their potential.  They grow up and become our lawyers, doctors, scientists, etc.  The smarter they are, the better we have it.  Right now, in some elementary school sits the next Bill Gates, Marie Curie, Jonas Salk.  That's WHY we spend tax money on our kids.

          Cutting back on spending on disabled kids is just a way of stating that we don't see the disabled as having anything to offer society, and that is just stupid.  Helen Keller, FDR, Issaac Newton, Christy Brown, Stephen Hawking, Woodrow Wilson.   I could go on all day.  How dare anyone try to use fear to intimidate us and shut us up, so they do not have to right by our children.  With OUR money.  How dare you?

Up all night

              So... Feisty Pants is sleeping so much better this week. Yayyyyy.  So her behavior is better in school.  Yayyyyy.   She seems to be doing better physically day to day.  Double yayyy.   Now, I just have to figure out how.  It could be the extra spinning they are doing at school.  She is in a therapy protocol known as astronaut training (which is basically spinning her) that works wonders on kids like FP who crave heavy vestibular input.  (Read that as heavy duty rough and tumble physical input- jumping, running,spinning, loud music, rough housing, etc.)  It could also be the sleepytime tea we are giving her. (Thanks, Celestial Seasonings, for that gift to the sleepless.)

               It could even be the fact that her sister has had her baby. (A HEALTHY  bouncing baby Winston Churchill, thank the stars)  and is no longer uncomfortable and sleepless herself. (Just sleep deprived.)  Feisty Pants and Hippie Pants have always weird. eerie parallels in activity and moods.  Have you all noticed this with your kids or siblings?  I'm an adoptee, so I'm not genetically related to my siblings so I never noticed this phenomenon growing up.  FP spent six weeks in a NICU, which are always tucked away and hidden in quiet hallways and behind locked doors. (I went over in the am.  Goo and Hippie Pants would arrive after he got out of work) The nurses would walk by FP's bassinet and say, "Oh look, her sister is in here in the hospital."  I thought they had cameras.  Turns out they didn't.  They simply watched Feisty Pants' body functions on the monitors.  Her breathing and heart rate would slow but her sat rate (a measure of how much oxygen is in the blood) would rise- a sign of physical relaxation.  They told me it was common for the babies to relax when siblings got close enough- not even same room.  Same floor.

            So, now we are gonna make ourselves nuts trying to figure out what we did right.  This happens a lot.  Not as a lot as I would like.  Trying to replicate a success, any success, is a problem I would like to have an abundance of.  But it makes me crazier than trying to fix a mistake.  I instantly turn into some of ocd case trying to recreate the magic. (Let's see last week we played this cd twice and sang before bed.  We will do EVERY night this week.  Two weeks ago we went for a walk in the a.m.- so we will do it twice a day this week.  Crap like that.)  It must feel like she's living in a wacky sitcom. (Dinner  with the  B.F. Skinners! a laugh riot)

             Sigh, but you do lose it a bit you know.  You look at your kids when they struggle and work hard.  You want so much to fix it all for them, disabled or typical.  Fit in or stand out.  Doesn't matter, you just want to make everything smoothly run for them.  Even when you know it doesn't do any real good to make it too easy.  Even when you know it's not possible anyway.  So now that she's sleeping better, I'll be up at night trying to figure out a thousand ways to keep that up.  Figures.

And yet more links

       So Awesome Pants and I were talking about free stuff online for kids.  (Awesome Pants volunteers to tutor kids in reading at a homeless shelter, because she is well, Awesome Pants.)  She was searching for free coloring pages to print. The kids love them and always ask her group to bring them.  I was talking about always being on the lookout for anything free for entertaining/teaching Feisty Pants. (I would probably accept a sample of the plague if it were free.)  And so we both started looking and sending things back and forth.  So I thought I would pass along a few more links.

       

       Free science experiment ideas- Scholastic.com's list of 40 science experiment ideas to get your inner Mr. Wizard on.

       40 Cool Science Experiments

           

       Party favors and craft ideas- Oriental Trading's current list of craft ideas.  This link takes you to their Valentine's Day edition so lots of lovey-dovey stuff.  (ewwww but FP thought it was cool.)

       Free Project Ideas

      

       Cooking-  a site with recipes for cooking with kids. This week's recipes feature chocolate. :)

       Cooking With Kids

   

       Make your own word search template- Awesome Pants and I are obsessed with word puzzles.  This is awesome sauce.

       Word Search Template

             

        More chemistry experiments- About.com's list.  (This site is one of my faves.  You can find almost anything on this site.)

        Chemistry Activities for Kids

        

        Printable worksheets for elementary age kids- Jumpstart's free printables.

        Printable worksheets

      

        

More Snowday stuff

               So, we had a lovely snowstorm yesterday.  Seriously awesome.  It was quiet and cold and the snow just kept coming.   That's honestly my version of a good time. Really, I love winter.  But a fabulous storm means another snow day.  And one seriously bored Feisty Pants.   Her new nephew swung by, but he's just five days old and is such a lightweight when it comes to partying with the in crowd.   He just keeps passing out.  Or else we really are as boring as FP claims we are.

               So, just in case your rugrats are as bored as ours were.  We came up with (again read that as gleefully swiped from any source what or whomsoever) three experiments to while away a boring afternoon.  Feel free to swipe too.

              1) Fun with crystals.  (If you call it that , it sounds all sciency, instead of "cheap way to get a sugar high")     You will need:  a bowl (or jar), chopstick, dental floss, nuts (or bolts), cup of water, 1  and1/2 cups sugar.

               Take a large jar or glass bowl.  Take a chopstick (or any stick) or wooden spoon.  Tie strings with weight attached to bottom of string (dental floss with a nut tied to one end works great.) to the stick.  Boil one cup water, stir in sugar and mix until dissolved.  Pour carefully into bowl.  Place stick across top of bowl so strings hang down. Given some waiting time- hours not minutes,  crystals will form along the strings.   Edible crystals. :)

 

               2)Oobleck- you will need two cups cornstarch, one cup water, some food coloring .  And if you really want it to be awesome, a cookie sheet and a speaker. 

                   Mix the cornstarch and water.  Let the kids play with this awesomeness as you set the cookie sheet on a speaker.  Pour the oobleck into the sheet and turn on the music and turn up the volume.  You can even add some food coloring to watch it go all trippy and beautiful.  The food coloring will dye the kids skin for a few days, but that's just the art version of battle scars. They are awesome, represent a good story, and the chicks dig them.

              

               3)Face art-  You will need cheap eyebrow pencils.  Maybe a lip pencil.  Think dollar store or bottom of mommy's purse cheap.  

                   This is honestly an afternoon of fun.  It's amazing what a new eyebrow or mustache will do the human face.  It sounds simple and silly.  It is. But it's also a good way to show little kids different expressions.  Some kids don't read an expression well and this can be a fun, safe way to practice.  And gets kids talking about feelings in an abstract sort of way, which helps them think about (and process)  their feelings. ("What does Mom look like when she's mad?) Plus when you're done, you can leave the new look on through dinner and that's fun.  Bonus points if someone new comes home and you pretend nothing's different about you.  You win the universe if you all go out to dinner like that.    

             

                What's your favorite way to while away some enforced down time?            

To Snark or not to Snark

                       Feisty Pants has discovered sarcasm.  She has probably known for a while. Like all parents, I am usually the last person to find out about her bad habits. Funny, how everybody else sees our kids' flaws long before they become a habit.  We always get to find them right about the time they are set in concrete.  And, my kids , unlike all your heathens, are sooo gloriously well behaved that any flaw should, by contrast, shine like a glittering jewel.  I don't have any clue where FP gets her snarkiness from.  (Well, to be frank, I do suspect her father.)

                       I discovered this when watching her converse with someone who was babytalking at her. A common problem, one that has quickly worn out its welcome with her.  Feisty Pants speaks and signs.  But her speech is garbled and her sign is (are?) modified, often gestures she has made up.  Her tongue and her hands do not cooperate with her.  She knows what she wants to say, but its hard to make YOU understand.  Add to that, there is sometimes a lag in time as she tries to force her muscles to correctly do what she wants them to do.  Often the conversation has moved along before she can get a word in.  But that is  different problem than not understanding and when others do not see that she is quickly frustrated.   How would you feel if no one understood you and therefore thought YOU were incapable of thought?

                     Apparently, FP's new feeling is somewhere south of frustrated and just east of "oh, eff it".  So now we have noticed, her mouth and her words don't always match.  Not in a nonsensical way.  More like, she says the polite thing, but is signing something different.  Someone asked is she was "eating her dindins"  the other day.  She said "yes," but signed "no, I'm pooping."  Another time someone asked if she was looking forward to meeting the newest member of the family.  She answered "yep," but signed "no, throw it away". All while watching my face intently to see if I have caught on.  And, me being the grown up mommy person, I have to try to keep a straight face through the whole shebang.  And the more it looks like I am having trouble, the more she does it.

                         So, here I sit on the horns of a dilemma, because I get it.  It's awful to feel dismissed.  It sucks being misunderstood.   And I want to encourage any form of self determination  and spirit in Feisty Pants.  But rudeness is not self assertion.  But she's not the one being rude FIRST.  They have usually kind of earned her scorn.  But not always.  She needs to learn patience too.  But it's so damn funny. She's basically sassing an adult right to their face and if they had only tried to understand her, they would see it.  And then she wouldn't do it. It would lose its appeal.  But it's still rude.  Mostly. And FP is little and cute and adorable which only makes it funnier.   Is it harmless fun or am I creating Snarkenstein?  I did try talking this over with the guy who is SUPPOSED to be the other adult in this house, but he just high fived her and that does not help.   So, to snark or not to snark?