Tuesday, May 16, 2017

In which Feisty Pants is not horrified by the Universe

                So Feisty Pants has had a horrible, awful, no good week.  Just ask her.  It all started last Thursday when she had to go for yet another sleep study.   Somewhere. some poor med student must be getting a PH.D. in Feisty Pants' sleep habits, she has been studied that much.   They really are absurd on the face of them. Take a kid who may not sleep well, glue leads and wires all over them, stuff a Bane like mask over their face, take them totally out of any version of their comfort zone and then watch from another room to "help" them.   I don't know about other kids, but my feisty one has seen this movie on Syfy a thousand times over and it never ends well.  So, yeah, she's really gonna sleep.
              And in order to get her to cooperate at all (Read that as no punching.) we have to bribe her.   With a shopping excursion as soon as it was over.  So no sleep the next morning either.   I don't care how many chocolate chip muffins and minion fries and lip balm you come home with.  Her sleep schedule is now all blown to hell and good luck getting her back on track.  Now mix in a sinus headache because it is raining pollen here. And hormones because she is fourteen.   And total appalled embarrassment because she has (gasp,  shudder) parents.  Two of them.  And they insist on talking to her public.   I don't know how she copes with it.  She's a saint, that one.
             But today, the stars have aligned and miracles have occurred.  The great Unicorn in the sky has smiled down upon her.  She got her ipad.  (This is a HUGE deal to a kid with garbled speech and she knows it)  The case came in BLUE too.  Her favorite color. And her miserable embarrassments, um er, I mean parents took her to the pet store as promised.  She didn't bite anyone at the sleep study either so she got four goldfish.  Whereupon she promptly named them John, Paul, George, and Ringo.   I was surprised and delighted by her choice. I asked if she knew who the Beatles were. "Yeah," she replied. "Hey Dude!"  I don't know if she heard the song wrong or just cannot pronounce Jude, but whatevs.  I'll take it.   Happy kid.  Happy Mom.  You'll have to excuse us as we ride off into the sunset.   Na na na na na na na na na Hey Dude.....
 

PS- Still looking for anyone who wants to share caregiver stories with a great advocacy organization.  Drop me a line if you're interested.

Saturday, May 6, 2017

Calling All Caregivers!!

               In light of this week's disastrous new inhumane low from our supposed  leaders, I have to decided to do something other than (in addition to?) merely swearing and bursting into flames. Health care is an absolute human right, especially for the disabled and elderly.   I know of an amazing organization called Caring Across Generations (link below).  They work to advocate for families caring for elderly parents and disabled relatives. (They have also partnered with groups advocating for better conditions for paid caregivers in our homes with the novel idea of maybe treating care givers better makes for better care and thus allows the elderly and disabled to live at home and in our communities.   Shocking, right?)
               To that end, they have asked yours truly if I would mind trying to collect a few stories to help educate law makers and policy makers on what we, the families and caregivers, truly need.  This way they will be better able to advocate for us and our loved ones who need care. So, if you have a few minutes, and are willing to answer a few questions, please answer the following questions for me. 
               Simply copy and paste the questions into an email .  When you have answered, send them along to me at Feistypantsmom@gmail.com. I will pass them along to Caring Across Generations.  If you would be willing to give them your contact info, in case they know of any media who wish to follow up, even better!  The powers that be need to hear our voices.  They need to see our stories.  Together we will make this better place for all the feisty ones (young or just young at heart) and their tired fams out there.  If this doesn't apply to you, dear reader, but you know someone to whom it does, please nag them mercilessly, um er I mean, please pass this along.  The more voices, the better. 
              So, here are my nosy questions:
1)Who do care for, why, and for how long have you been a caregiver?
2)What joys do you experience from this?
3)What are some of your biggest challenges?
4)Is it difficult for you and your family to find the type of care needed?
5) How difficult was it to navigate the care system?
6)What do you know now that you wish you knew when you began this journey?
7)How has your experience of care giving changed the person you are now?
8) What do you wish society at large understood about your situation?
9) What one thing could be done to help you in your caregiving?
As promised, the link to Caring Across Generations: caringacross.org/

Tuesday, May 2, 2017

What to do when Spring has sprung too hard.

             So spring has definitely sprung here in the Southern Tier.  It's too warm to sleep with the windows closed but too cold to sleep with them open.  Stray cats are randomly singing arias at all hours of the day. It's rainy and humid so my frizzy, wavy hair is now Texas sized frizz. When it isn't raining, it's raining pollen leading to all sorts of sneezes, wheezes, and woes for Feisty Pants.  So if you and your feisty (or not so feisty) one are like us and randomly stuck inside for the afternoon and therefore totally dying from the tortuous boredom (Just ask Feisty Pants. She will tell you all about it.) here are four fun, sciency  (shut up- it is too a word) things to do on a rainy afternoon.  You can then claim this was all in the name of good parenting and totally not because it was fun and cool. 
            
1)Glow in the dark flowers:
  You will need: a clear glass (for a vase), yellow highlighter, a flower, water, knife, black light.
  Use a sharp knife to cut open the highlighter and remove the ink cartridge.  Squeeze/stir the ink into the water in  the glass.  Add the flower.  Allow to sit for several hours and then check with the black light. 
Full instructions here:Kiwi Crate- glow in the dark flower
 
2)Homemade super bouncy balls:
    You will need: corn flour, glue, borax, food coloring, bowls, measuring cups, measuring  spoons, bowls, plastic forks.
 Mix 2TBS hot water and  1/2 tsp Borax in a small bowl.
 In a separate bowl, mix 1TBS corn flour, 1TBS glue, a few drops food coloring.
 Pour the first bowl ( borax) into the second bowl  (corn flour) and mix everything until it solidifies.  Roll into ball shape and allow to harden for 10 to 20 minutes.
Full instructions here:Good Housekeeping -diy bouncy balls
 
3)Soap foam:
    You will need:  1 bar of Ivory Soap (must be Ivory), microwave safe bowl (large) or plate, microwave.
 Unwrap the bar of soap, place in dish and nuke.   It will take about 90 seconds to 2 minutes (depending on your microwave) to reach peak size.
Give it a minute or two to cool and then have fun playing with it.  Don't worry, you can still use it.  It will just have strange consistancy.
Full instructions (and explanation) here:Thought Co- Ivory soap foam
 
4)Upside down planter:
    You will need:  Clean soda bottle (2 or 3 liter), knife, seedling (tomatoes, peppers, whatevs)dirt, string for hanger.
 Remove label and cut off bottom of soda bottle. Ease seedling into narrow opening (the top of bottle).  Gently fill with dirt and hang.
Full instructions here:The Crafty Crow- upside down planter
 
So there you are.  Go be a fabulous parent and enjoy.  You could even reward your little scientists and yourselves with ice cream for all your hard work and learning.  It's what all the cool scientists do.

      

Tuesday, April 25, 2017

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.                       

Friday, April 14, 2017

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?
             
  

     

Saturday, April 1, 2017

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.

              

Tuesday, March 14, 2017

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.