It's that magical time of year again

                     So, it's that magical time of year again.   No, not spring when all the stray cats thoughts turn to love and caterwauling on my porch and back fence, although it is that too.  No, not allergy season when the pollen falls like rain and a person's thoughts turn to sneezes and wheezes and itchy eyes, although it is that too.   No not even baseball season, where America's pastime has been gentrified beyond all common sense and fair play, although it is that too.  NO. it is IEP season, when teachers and therapists drown in paperwork and school administrators and parents gird their loins for the civilized adult version of the fight on the playground. 

                   For the uninitiated, IEP stands for Individualized Education Plan.  It is a contract that spells out goals and services that will be provided for a special needs student.  It is also a legal contract bound by various laws and regulations, so it is  (and should be ) taken very seriously.  Once a year, usually in spring from what I have seen, a meeting is held with all the teachers, administrators, therapists, parents, etc. to hash it out for the upcoming school year.  We are lucky in that we have found a good placement for Feisty Pants, so our meetings usually go rather swimmingly. ( I only swore ONCE this time!)  Plus I'm exactly the kind of pain in the ass parent who is fine with smiling whilst I nag the living hell out of everybody until we get a good IEP nailed down on paper.  But even when it goes well, it can be very stressful.  

                    So, to that end, here are a few sites (There are many- if these ones don't help just ask google until you find a site you like.) that have good IEP tips.   Hope your meetings are successful, not stressful.

1) Wrightslaw- wrightslaw.com

             I love this site.  Great tips for advocacy for your special needs kid.  Even great tips on conflict resolution.   (Check out "Playing 20 Questions with the Devil".)

2) Great Schools- Tips for a successful IEP meeting- Greatschools.org

              I like these tips.  They are pretty good for any stressful paperwork session.

3)Special Education Advisor- 'tis the season- Specialeducationadvisor.com

               Another good list of tips, especially for the perpetually disorganized such as I.

4)Wonder Baby's printable IEP organizer- Printable IEP Organizer
              Whaaaat?  A free printable organizer?  YES!!

PS- One last tip- Bring along a coffee.   It gives you something to do with your hands.  The caffeine helps keep you focused.  Also gives you a reason to stop and pause in case you want to think or not swear.                       

MRI Blues

              Soooooooo.....   here we sit in a radiology ward.  A simple procedure really.  Just an MRI of Feisty Pants' spine, the big hurdle before her upcoming scoliosis surgery. It unfortunately must be done under under anesthesia  (Feisty Pants will simply not be still for one)   so this meant a slog down to Philadelphia to get it done (most places will simply not put her under ). Honestly, this should not be a big deal.   We managed to get a room at the Ronald McDonald House.  We came down yesterday.  This should be going swimmingly.  But Feisty Pants and the universe seem to be laughing in the face of simple this week.  

            First, there was the rush back from the highway because we forgot her food. (For the uninitiated, FP is on a high calorie peptide based formula fed via g-tube.)  Then a five hour drive.  Then she decided that after a million tests and procedures that THIS one is the one she needs to be anxious about, so she didn't sleep last night.  So, none of us slept.  Now we are sitting in a radiology ward, where it's all hurry up and wait.  So, she is lying here on a gurney, getting more antsy and passing the time by kicking me.  You know, like you do.

             Annnnnnd, now we are back in a second room.  Feisty Pants, who hasn't been fed since 8 pm yesterday, is now hangry  and done with us all. We are supposedly just waiting for sedation.  Then they will take her back and decide where we will sit for the hour the procedure takes and the hour or so for recovery.  Hopefully before FP kicks a hole in the wall or totally bruises her knee attempting to kick said hole in the wall.

              Man oh man. Days like this are hard and long. And it's not even a scary ride today. This is a simple procedure with a complicated kid. But we are sleep deprived and hangry and shuttled around a rabbit warren of back alleys and corridors.  In about five minutes I'm gonna start kicking the wall and singing the blues too.

             Two hours after that...  We thought we were done when a  nurse and dentist came out.   But nooooo, seems they accidentally chipped her tooth when intubating her for the sedation.   So now they will re-repair it (what they chipped was a repair done on an earlier accident.) and then up to ICU for the night.   I am beginning to think the surgery will be easier than the testing.   We are in a good place.  They are taking good care of her.  Feisty Pants is not sick at all.  So why do I feel as if this week just keeps getting longer and longer?

             

  

     

Teenangster

           Originally, I was going to make this post be about tips for IEP season.  I plan on making that the next one.  (Totally adorable if you believe me.)   Then I was going to write one about survival tips for hospital stays.   I've done one or two before but a relative is inpatient right now so I was pondering it. (Feel better dude!)  But today we have had a semi normal day and I want to celebrate that.

            It started as an average school day for Feisty Pants.  She is fourteen now, so her school, whose curriculum includes what is known as "daily living activities" often includes doing things that simulate working life.  Today Feisty Pants worked at the "Prom Store"  The Prom Store is a simulated dress shop full of donated formal and semi formal attire where students going to the prom can choose an outfit to wear to said oh so important teenage occasion.  The kids get the items for free but there is whole process of going to the store and filling out some paperwork and then selecting/ trying on the dress, etc.   Apparently my kid had a frigging BLAST hosting her own little say yes to the dress event. (She gets that from her father. Seriously. I boycotted proms. Goo was a total prom skank.)  She had a communication device set up to ask if she could help,  to ask the students if they wanted to fill out a form, to say things, "Oh, you look nice"  or "How about this one?"    She even got asked to the prom by an older boy.  (You have to be sixteen to attend the prom at her school.)   She didn't mind- he was NOT the Boyfriend after all. 

            In fact, she a totally fine afternoon, in her opinion.  They even let her take a dress home too,  a black and gray spaghetti strap number with sequin embellishments.  All goth and girly at the same time.  Basically Feisty Pants' ideal dream attire. She was on a complete scored the best outfit high until someone asked Boyfriend Pants if he was going to go to the prom.  Boyfriend Pants is sixteen and can go.  WITHOUT Feisty Pants.  Who then decided the afternoon did suck after all.  And came home to tell me about it in NO uncertain terms.

             So, my fourteen year old girl had a totally adolescent day.  In which she had highs, thrills, lows, and outfit changes to match her mood swings.  And she complained a lot when she came home about it all.  And then demanded we buy her ice cream cake at the store the next day for her troubles.    Just like any other fourteen year old girl on the frigging planet!   I am officially calling this week a win and going to bed.   I wish you all peace, love, and ice cream cake.

              

Side Quests

        Greetings from Siberia!!!  Ok, not really. But we are having a lovely storm here on the East Coast, and I am gonna sit back and enjoy the ever loving hell out of it.  This week has just turned out to be a snow day for grown ups and I am grateful.

        You see, we are supposed to sitting in an admissions office at Shriner's Hospital in Philadelphia, as I type this.  Feisty Pants was supposed to be having the first of a two stage surgery for her scoliosis  tomorrow.  Obviously, that's not gonna happen.  Not because of the snow, but because the Universe sees fit to make my existence a trial by ordeal for someone with ADHD.  In the process of arranging for FP's surgeries, we have to {ahem ahem clears throat, opens locked room to reveal wizard's lair, unlocks ancient battered luggage with fangs as it tries to bite, removes dusty, arcane scroll written in ancient language with demonic aura, eyes roll back into head and begins to intone in magic prophecy}  " get a couple of clearances from a couple of different specialists.   Who shall then require several tests.  Which shall then send thee to more specialists.  Who shall require more tests.  And several machines to be placed in questseeker's home.  Which shall require more tests and other medical professionals.  And this shall take frigging forever and require you slay the evil dragon known as Insurance Requirements.  And several of these arcane wizards will be morons who want to send thee to  specialists to redo tests you have just done with the first batch of wizards. And in the meanwhile, time will pass and winter shall come and everyone will share germs so people will get sick, and someone (not saying who, but looking at you Feisty Pants) will be hospitalized and really slow this process down."  

           So, all the info has not been processed/gathered/fed to the demon of medical paperwork.  So the surgery has been delayed.    But since we are still waiting to get the last test done,  which by the way seems to include explaining to a doctor that Feisty pants does NOT need to see an ENT about getting her adenoids removed since she hasn't had them since she was six years old, the Universe has decided to cut me some slack. It has given me the loveliest of breaks.   Unlike all you summer loving freaks, I adore winter and snow.  We were stuck in Syracuse in a hospital for the two coldest weeks of winter and thus never got to enjoy it. You never really see the outside world when your kid is hospitalized. At best, you just see various parking lots between the room your kid is in and the room you pass out in. But today, oh today. I woke to about a foot of gorgeous snow on the ground, and a lot more on the way.  Goo made a fresh loaf of bread.  I have a pot of veggie soup in the crockpot. There was mini Dr. Who marathon on to keep FP occupied and happy.  I'm just gonna sit here and sip tea and absolutely revel in this in between moment the Universe has sent my way. Thank you Universe.  We really needed this.

Birthday House Rules

           Feisty Pants' birthday was today.  She turned 14.  Ruled the school.  Had a blast with Facebook messages.  Sailed through her bday dinner like a Roman emperor. ( In her honor, we made Cheweverything Pants a senator.) 

            So, since Feisty Pants totally slayed the day, I humbly present her rules for complete birthday domination.  You're welcome.

1) Know that you're cute.  Even if you're not. I don't care if you look like a rooster or Frankenstein or something from the Walking Dead.  It's your day so you're automatically more beautiful than all those non birthday having mortals. Own it. Wear your favorite birthday outfit.  Dress for the job you really want. Wanna be Batman or a unicorn?  Do it.  Feisty Pants chose a hello kitty tee, a tiara, and a screaming pink sash that proclaimed her the "birthday princess".

2) Be gracious. Kindly and humbly accept all the praise and adulation that is due you.  Of course those aforementioned mortals should be heaping good wishes, presents, and songs of praise upon you, but a good thank you and a nice smile will make sure they keep coming next year.   All it really takes is just a little kindness to keep your minions happy.

3) Do your homework in a timely fashion. Want dinosaur poop for your birthday? Make sure the gifter knows well enough in advance to order it from the museum store in time.  Want your boyfriend to get the perfect card for you?  Give his mom the right hints and you too can get a hello kitty card that perfectly matches your outfit.  Want special cupcakes with special icing? Throw that fit right before your mom goes to the store. Timing is everything.  Be prepared.

4) Last but not least, don't forget to have fun.  Throw the party. Have cupcakes AND a cake. Eat a giant piece of cake.  Split the cake with the dog.  Wear your new tiara.  And when the party is finally over, curl up with the dog on the couch and see who can happily snore and/or fart the loudest. (Hint, Senator Cheweverything Pants will win.) 

           There you go.  How to rule the birthday kingdom like the benevolent despot you were born to be.  Have fun and don't forget to keep your tiara on at slightly rakish angle.  It's cuter that way.

           

Same old, same old

               So, Feisty Pants is hospitalized again.  Which means I have a legitimate excuse, umm er,  i mean real reason for slacking off, um er, I mean neglecting the blog because I have been so busy.  Really.  I promise.  

              It started out as not such a big deal, a simple tummy bug.  But she couldn't keep anything down, including her meds so off we shlepped to the er. We expected everything to go rather swiftly, get an anti-emetic, go home to ride it out.  That was a week ago and we are on hospital number two right now

               Hospital number one had an idiot, um er, I mean overly cautious doctor who decided she was in respiratory distress and needed to be transferred to effing Timbuktu.  In a snowstorm. Seriously.  The first ambulance wrecked on the way to pick up feisty pants and we had to wait for a second one.  We almost wrecked at least three times on the way here.   I am curious as to why she was considered such a medical risk that it was ok to risk that ride, but during the 12 hours we were at the first hospital we saw no respiratory therapist and she received no breathing treatments or medications other than an antibiotic.   Call me silly but if you're gonna diagnose her with breathing problems shouldn't you also TREAT said breathing issue?  

                 Anywhoo, that's going to be an interesting conversation for when we get back home and talk to her pediatrician. For now, feisty pants is definitely on the mend.  The hospital life has become routine again.  We were lucky and got a room at the local Ronald McDonald House, so other than the forced isolation that being away from kith and kin brings (I am so bored at night that I practically talk to myself), I guess we are just waiting this one out.

No, just no

       Sigh...  I wanted to make this about cute Valentine's Day projects that aren't too babyish.  Feisty Pants is "almost fourteen harrumph" (read that with rolled eyes and your best teenage sneer) and has a boyfriend and is just too old for little kid stuff.  Except for really cute Valentines, and Hello Kitty, and puppies, and anything that makes her squee.  But every time I turn around, the world seems to want to wax the bottom of the hand basket we are going to heck in so it will slide faster.

       We have an idiot named as Secretary of Education, who seems to not understand about things like the ADA or the IDEA act or FAPE or have any effing clue about education being for EVERYONE and not just the rich.   We have a congress, full of people getting FREE health care that we pay for, determined to take away everyone else's.   We have an ignorant, sexist, racist leader who is worried more about his own power and prestige without any seeming understanding that political office is meant to be about public service, not private gain. And a gazillion jackasses following behind him who think it's now time for some weird orgy for bullying. 

            I am so done.  Seriously, stick a fork in me.   But while am waiting for that moment when I shall spontaneously combust, (and please let it be next to some d*ck who deserves to burst into flames with me...), I want to get a few things off my chest.

            1) There are NOT more and more people on SSI or disability benefits simply because they are lazy. Or are getting better at scamming the government.  If it seems that way, it's because more people with disabilities are living due to better medical care. (Feisty Pants is one of those people.)  And because better equipment means they can get out and about more. And just maybe,  because we no longer hide our disabled away in institutions and attics.  

            2)  Children with special needs are not just pampered wussies who parents mollycoddled them too much.   Autism is a difficult processing disorder. ADHD kids want to be good. A melt down is NOT a temper tantrum. And we are talking about CHILDREN, why do people expect children to be better behaved than adults?  If you honestly think that a special needs child just needs more "discipline"  (by which you simply mean punishment- not actual discipline.  Punishment is when you smack your kid. Discipline is what I use when I don't smack you.)  then you, dear reader, are an asshole. 

           3)  Disabled children grow up to be adults with talents and skills and value all their own.  How dare you expect my daughter's education to be a glorified daycare?!  How dare you expect her to not have access to health care as good as anyone else's?!  How dare you not allow her to dream big, have ambitions, contribute to society, and make the world a hell of a lot better then this mess we have apparently created?!    

            I grew up with disabled siblings.  Children of my older sister's generation were usually shuttered away in horrible, overcrowded institutions where they were neglected at best.  My parents had to sue the state they lived in to assert my sister's constitutional right to an education.  When my parents wanted to adopt, they were told they would have to institutionalize my older siblings because it was too hard for my family or no adoptions. (My folks very rightly told them to buzz off.  Ended up with two adoptions anyway. ) They, along with so many others, fought daily for every inch of progress made for kid's like Feisty Pants to have a decent shot and a fair start.

            So, for my folks, who fought so hard.  For my sister who never was given the chances she should have had.  For my brother.  And most definitely for Feisty Pants.  We will not go quietly back into the dark ages of disabled rights.  We will not go quietly back into institutions and back bedrooms and quiet poverty. We will not go back.   And if I have to, I will gladly spontaneously combust and take all you d*cks with me.