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ReJenerationS



re·gen·er·a·tion: spiritual renewal or revival; renewal or restoration of a body, bodily part, or biological system; the state of being regenerated...



Updated: 2018-03-21T07:20:43.676-04:00

 



Bright Beltane Blessings

2017-05-02T11:17:51.342-04:00

Beltane post from 2015, HERE

Once again our family celebrated with dinner outside, dancing the Maypole, and making May Day baskets (cups decorated with stickers and filled with popcorn and candies).  The kids love the excuse to ding, dong, ditch and leave little treats for the neighbors and the neighbor kids love getting in on the activities.  It is always fun to entertain our neighbors who love to watch the kids from their back deck and munch on the goodies.  We were not able to do a fire this year as it was a school night and the festivities ran late.  Blessings to you all!

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Easter 2017

2017-04-16T11:35:49.451-04:00

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The Most Sincere Pumpkin Patch

2016-10-12T22:33:35.868-04:00

Once upon a time the kids did not have school and the weather was perfection so we spent the day on a farm.  A wagon took us to the patch where we picked pumpkins still attached to their vines.  We bounced in the bounce houses. There was funnel cake and pumpkin ice cream, and an apple cider slushi, and a 3D alien haunted warehouse, and a corn and hay bale maze.  I am certain the Great Pumpkin would agree that we found the most sincere patch of them all. [...]



Easter 2016

2016-03-27T17:34:18.503-04:00

[...]



Trunk or Treat 2015

2015-10-23T23:21:23.987-04:00

The PTO put on our school's first Trunk or Treat on this fine October evening.  For those unfamiliar, this is an event where trunks are popped, decorated, and children travel from car to car to Trick or Treat.  A DJ, pretzels and pizza added to the fun."I want to be a fox and a pirate," Helena declared weeks ago and she stood by her plan.  I donned a witch's hat, Alexander was an alien from Alien vs Predator and Sophie went as Doc McStuffins.Mark arrived after working late and helped us set up our bubble machine.  He discovered that taking flash photography of bubbles mid-flight produces quite the image.Despite Alexander and I having pneumonia (and spending a bit of time in the van in front of the heater) we were glad to have gone to witness the benefits of inclusion in action.  Sophie was interviewed by the high school tv kids who knew her from summer camp.  Her friends from class came and spirited her away from me for most of the event.  Would this be the case if she remained unknown to them?  I know in my heart it would not.  This is why our advocacy, promotion of inclusion, acceptance, and respect do not get sick days.  We do it for Soph and for all of us who happily reside outside of "normal." My little Hamlet[...]



No Pity. No Charity.

2015-05-29T22:23:57.105-04:00

“Children with disabilities are amongst the world’s most marginalized and excluded children.”
---World Health Organization, World Bank, 2011



I will never give up.  Out here in Philly we have formally declared an Inclusion Revolution

I am a revolutionist.  Are you?  #InclusionRevolution

Here are the thoughts of revolutionary educator Torrie Dunlap at a TEDx Talk.

Isn't it a pity? The real problem with special needs

What do we gain when we build a community where everybody belongs?
What do we gain when we separate kids and what do we lose out on when we do?


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How do we want our children to be regarded? As something fragile, broken, and special? Or as people who have a right to fully participate in our communities? I believe that when we examine our own mental models around disability we will no longer default to pity and charity but instead we will put our efforts into building communities that are accessible to everyone and everyone will benefit.

#InclusionRevolution Pass it on!



Joyous May Day 2015

2015-05-03T10:51:50.338-04:00

The winter was long and hard and we are limping to the finish line of this school year.  For thousands of years when Spring was in full bloom the people would pause to celebrate the coming of the warm time and changing of the seasons.  May Day or Beltane as it is also known begins at sunset and continues through the next day.  This is a celebration of fertility and life.  It is a holiday of hope, beauty, and new beginnings.  As a child in the USA I have memories of making May Day baskets filled with treats.  We would deliver them to neighbors by ringing their doorbell and then running away so that they would not know who left the goodies.  I have thought of this every May 1st since becoming a mother and decided this year I would introduce my children to this tradition. The screech of the school bus’ brakes preceded little girl giggles that filled the air like music.  We celebrated the return of dirty bare feet on soft green grass.  White paper cups, a roll of twine, a hole puncher, crayons, and stickers would be used to create our May Day baskets.  M&Ms, Sweet Tarts, Life Saver gummies, and popcorn were the filling.  Alexander popped in for a moment or two for treats before going off to do his own thing.  Traditionally the people would dance around a pole with ribbons woven in merriment signifying fertility.  Flowers, incense, feasting, and bonfires marked their celebration and ours.  Inspired from a scene in Alice in Wonderland, our Mad Hatter hat topped the pole which we secured in our umbrella stand wrapped in red, scrap fabric.  It turned out beautifully. Neighbors shared long forgotten stories of their childhood May Day celebrations and I was dubbed the May Queen of Garrett Hill, which I quite like.  Our dinner was grilled and we feasted outdoors by candle light.  The last hours of the day were spent mesmerized by the dancing flame of our back yard mini bonfire and the sweet smell of vanilla incense smoldering on the log.  The girls fell asleep in the night air.  Only when the last of the embers had died out did their daddy carry them one by one to their beds, perhaps dreaming of magic and fairies. height="225" src="https://player.vimeo.com/video/126706091?byline=0&portrait=0" frameborder="0" width="400" allowfullscreen="allowfullscreen" mozallowfullscreen="mozallowfullscreen" webkitallowfullscreen="webkitallowfullscreen"> A larger version of the video can be found HERE. [...]



Beyond Awareness

2014-10-01T23:35:17.773-04:00

October is my favorite month of the year for many reasons; Halloween, pumpkin flavored everything, football, apples and cider, a chill in the air, turning leaves, hay rides, scary movies, footie pj’s, and tights. So here it is, October 1st, and I’m enduring an internal debate. I’m exhausting myself (as per usual).

This month highlights awareness campaigns for Down syndrome (DS), domestic violence (DV), & breast cancer. These 3 are big in my world and 2 of them have had great success in making us aware. Thanks to recent news surrounding the NFL, DV is finally starting to get the attention needed for real change. I pray the world doesn’t get bored and move on.

As I think about how I want to honor DS I can’t stop wondering, “what is normal?” What does it mean to be low or high functioning? What does a typical family or typical existence look like and how is that so different from my own? Disability is normal. It is a part of the human experience whether it happens prior to birth or later. Whether it is 'cured' or managed.

Everyone has challenges. Everyone. Sometimes they are financial. Marriages fall apart. Families are blended. Single parents do the work of a village. People lose jobs or get diseases. Those living with mental illness are stigmatized and are failed by a broken system. Our LGBT community still fights for fairness within the law and for the right to walk down the street without being brutally assaulted or shunned by our families. Addictions and sexual assault are commonplace. Sometimes through accidents or illnesses our loved ones pass away too soon all the while we continue to get older every day. Which of these are abnormal?

Awareness campaigns come from a wonderful place. When you are aware that early detection can increase your chances of surviving breast cancer, you’re more likely to feel your boobs and see your doctor. When as a society we begin to hold abusers and sexual assaulters accountable for their actions, survivors will be more likely to seek help and hopefully violence will lessen. When we tell you that language has power, those with compassion choose words that don’t demean. The invisibility of Autism dissolves as others comprehend public meltdowns.  As we continue to demand equality, our kids with special needs will receive the supports and services they need to thrive in school and in the community throughout their lives.

Those of us involved with Down syndrome awareness open our lives to the world. We let you into our private spaces to witness the gold, the shit, and the mundane so that we are no longer outliers, invisible pariahs and therefore irrelevant or scary. We strive to create a society where normal means acceptance, inclusion, equality. In doing so we support others facing similar challenges. We aim to make the world a safer place and I know we have.

And yet I’m restless. I’m beyond awareness. I want revolution and I want normalcy. My life’s work is to battle loud and fierce regarding; housing and program wait lists, budget cuts for education, supports, and services, funding and access to disease cures, legalizing medication that is long overdue, rights for all regardless of ethnicity, genitalia, religion, or who we love. I dream of a time when all of us are normal, where knowledge and understanding are so commonplace that what currently makes us outsiders will be nothing more than attributes to describe our existence to one another.




Independence Day

2014-07-05T20:09:37.495-04:00

We decided to take this year off from hosting our annual Garrett Hill parade watching party.  We just weren’t up to the work involved in party prep.  Rolling out of bed late, I grabbed a quick shower and had my coffee on the front porch just as the parade began.  Some friends joined us and we filled the neighborhood with bubbles from our Gazillion bubbles Hurricane machine (Sophie approved).  Gazillion bubbles are truly the best, hands down.

Our neighborhood celebrated our 65th annual 4th of July parade and festivities.  We have an honest to goodness parade that happens to pass directly in front of our house.  Afterwards, the neighborhood park is abuzz with face painting, a dunk tank, a live show (magic in years past, a master juggler this year), bounce houses, a mini-train, spin art, hot dogs, pretzels, and drinks – all FREE!

I scooted Alexander over to our friend’s house as they were having their annual party that we are never able to attend due to hosting our own.  Their back yard bumps up against the park and gives them front row access (or back row as it were) to the live show.  Helena went off to the park with other neighborhood friends.  Mark and I strolled down with Soph at our leisure.

Typically we still have guests at this time and miss out on the activities in the park.  Typically it’s heat stroke hot, but due to some gentle rain before and after the parade and Hurricane Arthur it was perfect.  We were able to hang out with friends at their party and help ourselves to their food, which was a fantastic treat!  Although we missed our usual guests, this was great.

At most houses in our neighborhood, the sounds of parties and smell of BBQs filled the air.  After a lazy afternoon sipping wine, napping, and watching the Walking Dead marathon, we headed out for our township’s fireworks.  Again, we haven’t caught them in our 4 years of living here as we are all typically worn out by the party and heat and head to bed early.  It’s only a 10 minute drive, the entry fee goes towards our high school scholarship fund, and we met up with our friends who had terrific seats on the soccer field.  Grand!

None of the kids got scared and traffic home was a breeze.  I love this community.  This is home.  I’d like to thank our military for continuing to protect our freedom which allows us to celebrate in this way.  It is in their honor that I created this slideshow which I think captures a nice slice of what they work to protect.  Happy Independence Day!

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Watch larger: 4th of July 2014




Last Day of School 2014

2014-06-19T11:54:31.500-04:00

Yea, though I battle through the valley of the shadow of IEP season, I shall fear not using the Procedural Safeguards: for the law art with me.

With a brutal winter and a ton of snow days, our school year ended even later than it typically does.  It is with great joy that we have entered SUMMER

This IEP season for both kids has been the most difficult to date.  Countless IEP meetings in person, via email and by phone could not resolve differences in opinion between our family and our district.  Hiring a great attorney changed all that and with her help we are finally moving forward in a way we can support.

I’m not litigious and pride myself with my negotiation skills, so it is no small thing that we are ending this school year and entering ESY for summer with 2 settlement agreements.  I did not want to have it go to this level, but our core belief in inclusion, FAPE, and LRE just didn’t line up with our district’s plan for educating our 2 kids with IEPs. 

Despite our disagreements I continue to believe we have a fantastic team of teachers and therapists who believe in our kids.  When you have as many team members as we do, you have to get creative in order to be thrifty with thank-you gifts.  I ordered these extra large soup mugs in November intending to use them as holiday gifts, but then I had spinal surgery and they sat in boxes.  I’m pretty happy with how they turned out.  Mark helped me package them in cellophane and ribbons and dropped them off.

In any case, I’ve learned so much through advocating for our kids and I am more determined than ever to make systems change.  I’ll just need a little time to recover.

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Welcome to SUMMER - rising 4th grade boy and 2nd grade girl!




Gratitude

2014-04-12T12:55:45.002-04:00

Yesterday Sophie went to her friend E’s “Birthday Party in Paris!”  I think the scarf and blue stripes fit the theme quite well.  Soph actually kept the scarf on the whole time.  E’s house was decorated in bubble gum pink, Eiffel towers and pink poodles.  So cute!I brought a bag with an extra pull-up, wipes, and a straw/lidded cup. I pulled the birthday girl’s mom aside and for the first time ever (and Soph has been to a LOT of birthday parties) I truly did not feel apprehension.  I made sure she knew to use the cup to avoid a spill.  I showed her the pull-up and wipes and made sure she was comfortable helping Soph should the need arise.  She is pretty independent in the potty, but has a regular need for a change if we don’t initiate a bathroom break.    AND THEN I LEFT! Mark and I had a babysitter coming over and I needed to get ready.  I actually RAN out the door.  It wasn’t that the dozen girls swarmed Sophie when she arrived as if they hadn’t seen her in ages (it was 1 hour after school got out).  It wasn’t that the birthday girl’s brother exclaimed how much everyone really likes my daughter.  silly faces!It was the quiet arrangements and understanding from the birthday girl’s mom that have me on.the.floor.  She knew Sophie has to be closely watched or she is likely to run off and she’s fast.  As keeping a dozen 6-7 year old girls entertained is difficult enough on it’s own, being far into her pregnancy meant that she knew she needed reinforcements.  So, she got them.  She had a wonderful young lady there who as far as I could tell was the official Sophie Minder.  Now, Soph’s peers do a great job refocusing her, but she can be stubborn.  This helper was fantastic. spinning girls!The mom didn’t blink at the idea that Soph came with an extra pull-up or lidded cup.  She didn’t have a look of anxiety on her face when I told them to have fun and headed for the door.  She was unconcerned and ready.I’ll say it again.  I dropped Sophie off at her friend’s birthday party without a trace of anxiety, knowing she was in loving hands with people who accept her as she is.  The adult in this scenario made arrangements ON HER OWN to be able to make this happen.  It couldn’t have felt more natural.THIS is why we believe in inclusion.  It’s not about academics alone.  It’s about building a community where everyone belongs AS THEY ARE inside and outside of school!  Sophie's friends have embraced her for as long as I can remember, but folks, she's got multiple generations on her side and it is AMAZING![...]



Township 4th Annual Eggstravaganza

2014-04-08T20:46:30.619-04:00

Reason #437 why we belong here:

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Bionic Woman

2013-12-05T09:53:46.139-05:00

continued from part 2, HERE.I did my due diligence, believe me.  Spinal surgery isn't something you jump into just because one or two specialists tell you to.  The first neurosurgeon I met with impressed me.  Kind, patient, thorough and smart he instilled confidence as he explained my options.  Despite having done my homework on the two surgical approaches, I learned quite a bit from him.  He did a series of neuro tests and we discovered that my walking had been altered, a fact I hadn't noticed.  It's strange how we compensate without realizing it.  He asked me to do the field sobriety test that police use, walking heel to toe in a straight line.  I flunked as I could not take one step without falling over.  I admit, it jarred me. The pain in my neck, shoulders, and left arm had continued to increase daily and my right arm and hand is now symptomatic.  Although I hated to do it, I had finally accepted that I could no longer work and went on medical leave.  Though I had tried a long list of medications, I had declined pain killers any stronger than Ibuprofen, wine, and muscle relaxers.  Something about failing the walking test and the potential permanence of my condition led me to accept the neurosurgeon's suggestion that I try a nerve pain killer as well as a narcotic pain medication.  The good doctor ordered additional tests including a C-spine CT and X-rays.  In the meantime I continued to seek additional opinions. Research kept pointing me towards Jefferson University.  Still, I met with another neurosurgeon that my neurologist had recommended.  He was very pleasant but was ruled out almost immediately as his medical group was not authorized to perform the type of surgery I was hoping for.  In most cases like mine, the bulging disc is removed and replaced with a bone graft either taken from the patient's own body, typically the hip, or from a cadaver donor.  The vertebrae above and below are fused with a plate and screws. This limits mobility of the neck.  Also, just as with my congenital partial fusion of C5/C6, the added stress on the bones above and below the fusion will begin to degenerate.  Additional surgeries are likely.  The other option and the one I prefer is an artificial disc replacement.  Just as with the fusion surgery, the bulging disc is removed.  Then a metal plate is secured to the bones above and below with a plastic ball in the middle creating a ball bearing.  Mobility is much greater and the stress on the bones above and below is not a concern.This doctor agreed that artificial disc replacement was a good alternative and he began to think out loud of colleagues he could refer me to.  The first place he mentioned was Jeff (Jefferson).  I told him I was aware of Dr. Heller at Jefferson and his response sealed the deal.  "I couldn't be in better hands," he said.  He couldn't be happier that I would be with Josh, his good friend.  Dr. Joshua Heller was the first opinion I had sought.  Happy with the ringing endorsement, I was relieved to have made my decision.  Next was the CT and X-rays.I've taken my meds as instructed, though they don't really make a dent in the pain.  The zapping electric shock in my hands has been unrelenting.  I constantly drop things due to weakness.  Simple tasks like washing my hands or buttoning buttons are difficult and increase the sensation. The meds have, however delivered their promise of weight gain as a side effect.  I feel like a hose has been plugged into my belly button as I've blown up at an alarming rate.  My face is as round as a cherry tomato.  My eating hasn[...]



Emulating Wonder Woman

2013-12-05T09:56:22.252-05:00

continued from part 1, HEREAs a tot my heroine was Wonder Woman. Beautiful, strong, justice fighter and feminist icon, I didn't just look up to her. I wanted to BE her. According to family lore, my parents took me to Penney's to buy my very own Wonder Woman costume. This was in the late 1970s and I was about 3. They had other costumes in stock but not Wonder Woman. No other costume would do so I stood my ground and we left empty handed. My Aunt Sandy was living in Florida at the time and she went on a search and found it. Back then we had to wait for Saturday morning to watch cartoons. The way my mom tells it, I woke up early in anticipation of the show and put on my costume believing that it would give me the same powers as the Amazonian Princess. When my powers failed to materialize I had a complete meltdown, barging in on my still sleeping parents. In my first identity crisis I screamed in disbelief that it wasn't working and where was my invisible jet?!I consider myself to be young, even at 37, with more of my life ahead of me than behind. My purpose here on this planet is to be a justice fighter and I accept that role with joy. When I take a step back and look at my life I am amazed at what I've survived and what I have accomplished either in spite of or as a result of some pretty heavy experiences. Whether it be my work in high school and college in child abuse prevention, my years of community service through AmeriCorps*VISTA, my 20s in domestic violence intervention, or my 30s as an advocate for the disability community, I am honored to serve the underserved and blessed to have found work that shares my focus.My pain, numbness, and increasing weakness were no longer just annoyances. It was stopping me in my tracks, preventing me from my work. Weeks of conservative care didn't help so I saw a neurologist who ordered an MRI of my C-spine. Our assumption was that I had a bulging disk in my neck that was pinching a nerve. I was given a CD of the MRI images and it was clear that my disc between C4/C5 was herniated. The radiologist posted the written report on-line which I accessed through my health care website on a Sunday morning. I spent the better part of the day combing through the one page report. Going only to well respected medical sites I meticulously deciphered each finding and reported them one by one to Mark. He was dubious about my layman interpretations and reminded me that we would be meeting with the neurologist in a few days. "Leave it alone," he insisted.By late Sunday afternoon I felt confident in my understanding of mild endplate irregularity, discogenic marrow signal change, mild to moderate loss of height and signal, marked hyperplasia, uncinate hypertrophy causing moderate to severe neuroforaminal stenosis and paracentral disc protrusion that focally deforms the ventral theca. As a Momologist I do not need to have a degree in neurology to read and grasp medical terminology. We Momologists hone skills out of necessity to help our children with special needs.The third impression in the report is the one that made my blood run cold. Posterior disc bulge at C4/C5 that compresses the spinal cord, eccentric to the left. The central cord shows associated focal T2 hyper intensity at this level consistent with myelomalacia from chronic impression. The report lists 5 impressions. Why the radiologist stuck this one smack dab in the middle baffles me. Irrational, I raged at the injustice of the order of findings that in my mind should have been ranked in some kind of order that made sense, such as; least important to most pressing or the reverse.Myelomalacia. I searched and searched for more information, desperate enough to pee[...]



Regenerate

2013-12-05T09:59:35.267-05:00

When I started this blog 5.5 years ago I wanted to come up with a name that had meaning.  Change the G to a J and you get ReJenerationS which has my name in the middle and my initials (JRS).  It nods to multiple generations, but more importantly the definition and concept of regenerating resonated deeply with me.  It’s not just about growth but about healing, restoring what once was or making something better than it was before it was broken down.  It can refer to physical or emotional states.  Regenerating can be spiritual in that a person’s faith can be questioned, examined, and radically changed.  Relationships sometimes go through this metamorphosis.  Those that survive a trauma come out stronger.  Sometimes this takes months.  Sometimes it takes a lifetime.Regenerating over and over is how we experience life’s lessons.  My greatest challenges, even the most painful have resulted in growth that could not have come any other way.  It occurs in cycles, sometimes overlapping, never within our control.  Some are more serious and have more impact than others.  I’ve come to believe that this is the whole point to life.  That we experience the full range of joy and sorrow in order to learn and evolve.  We are charged with coming through these challenges better equipped to bring joy to existence.My current challenge began while I was still being knit together in my mother’s womb.  Before I was born two bones in my neck that were supposed to separate failed to do so resulting in a partial fusion of the bones C5/C6.  For my whole life I’ve had a slightly less mobile neck as a result.  I didn’t know any differently.  The trouble with unseparated vertebrae is that this causes arthritis or degeneration in the bones and discs above and below the fusion due to the added stress placed upon them.  This degeneration was a process set in motion from my beginning.As we age the majority of humans, if given an MRI, will eventually show wear and tear of our spines.  That is because we carry our 10 pound heads around on little bones designed to be strong, yet flexible.  Spines are a fantastic design, but they often experience injury regardless of how careful we are.  In 1997 I was a passenger in a car that was rear ended by a drunk driver on an interstate.  My neck suffered trauma but no broken bones.  Conservative care for many months by a talented chiropractor brought relief.  Through the years I have reinjured the area by seemingly harmless activities like housework or exercise.  Chiropractic care has always come through for me.During the month of August, Mark and I took turns taking Sophie to a feeding program at the children’s hospital every day, Monday through Friday.  On my days we would take the train.  I would help her on and off and lug her heavy back pack on my shoulders all day.  In early September my symptoms set in.  At first I noticed a tingling sensation in my left pointer finger and thumb, like it feels when your hands or feet “fall asleep” by sitting the wrong way.  Then my neck and shoulders began to hurt in the old familiar way so I did what I knew and went back to my chiropractor.  I’m a busy person so despite the pain, I went sporadically in September.  One day, I arrived in a ball of snot and tears from the pain, the numbness that had increased, and pain in my arms which was new.My doc had a Come to Jesus talk with me (ironic, given that he’s Jewish).  With a soft, kind voice but a firmness I had not heard in the three years of being his patient, [...]



Buddy Walk 2013

2013-10-19T21:16:49.757-04:00

Team Sophie rocked our 7th year of participating in the Buddy Walk for Down syndrome awareness.  To be honest, I wasn’t sure we would be doing it this year for a variety of reasons.  I formed a new Daisy Girl Scout troop for Sophie’s 1st grade and Kindergarten peers.  Our troop decided to support Team Sophie and Team Nate.  Maddy is in 1st grade and her handsome little brother Nate happens to have DS.  Somehow we ended up in the local paper. By Linda Stein lstein@mainlinemedianews.com On Sunday about 4,000 people will gather to take part in the 12th annual Buddy Walk and Family Fun Day which benefits the Children’s Hospital of Philadelphia Trisomy 21 Program. Trisomy 21 refers to the presence of three copies of the number 21 chromosome, rather than the usual pair. It causes Down syndrome, one of the most common genetic disorders affecting some 350,000 Americans, according to the Down Syndrome Society.  This year, 16 Girl Scouts, who are part of Sophie’s Team, will take part. Sophie Schrad, 6, a Radnor Elementary School student with Down syndrome, will join members of her Daisy Scout troop taking part in the walk, said her mother, Jen Schrad. The Schrad family has participated in the event since Sophie was born, said Schrad, who is also the troop’s leader.  read the full article here. Not only was I blown away by the support from Sophie’s troop sisters, but I came home the other day to find an envelope full of more donations from our elementary school community for Team Sophie.  We are overwhelmed. height="300" src="http://www.youtube.com/embed/9pwU2Yd0jWU?rel=0" frameborder="0" width="400" allowfullscreen="allowfullscreen"> Darth Vader & a very brave young Jedi We are exactly where we are supposed to be. [...]



The Trouble with Food

2013-08-13T20:55:55.308-04:00

(New here?  I suggest you read the first post on the Children’s Hospital Day Feeding and Swallowing intensive program, HERE). It was going so well!  Week 1 of intensive feeding school got us to the point of where Sophie happily ate hotdogs and macaroni and cheese in addition to her few preferred foods. Over the weekend when she does not have the program, I was thrilled to successfully get her to eat 2 hot dogs and strawberry applesauce.  Yesterday in therapy she even ate pancakes and pureed broccoli!  I made a modification to her umbrella stroller with PVC pipes and duct tape (costing only $3.46) to extend the handles and it worked like a charm.  Those original handles are just too short!  The compact stroller is good for taking on the train and keeps her from getting too tired from walking.Today was my day with her and the stuff hit the fan.  I got into trouble for feeding her in the same manner that she is fed during therapy as I could screw it up.  At her first of 3 meals she was introduced to eggs with a little cheese.  She spit it out every time and started chucking her toys across the room, yet it wasn’t that bad. Prior to 2nd meal Mr. P. asked if they could use her iPad as incentive and I agreed.  Big mistake.  I was gone for maybe 5 minutes to heat up my lunch.  We are not allowed to eat in front of her as it is cruel, so that means when she eats we eat behind the two way mirror as we observe the session.  When I entered the observation room, this was happening. height="225" src="http://www.youtube.com/embed/sUvWwCSP9R4" frameborder="0" width="400" allowfullscreen="allowfullscreen"> What the what?!  She is not supposed to know that we watch her sessions so I couldn’t rush in and comfort her or pick her up and run away.  So I watched her as my own lunch got cold and she melted the.heck.down. I am a parent.  I am not a feeding therapist so this is my layman’s understanding of the protocol.  I understand why they do what they do, but it does not make it any easier to watch.  The rules, which are stated at the start of every session are simple and clear.  Eat and you get to play.  Don’t eat and I will need to help you.  Still don’t eat and you won’t get to play. When sessions go badly, as they did for the duration of this meal and the last meal, they will not alter protocol.  She could be having a bad day or not feeling well, so they want to give her the benefit of the doubt.  They also want to show her consistency.  However, the psychologist sat with me for 3rd meal and we had the talk.  She gets one more meal with this protocol.  If she continues to refuse food, in order to continue the program we will need to give permission to add a helper to block (hands, turning away) so that the feeding therapist can get the food to her mouth. (sigh) It wasn’t even the food that set her off in meal #2.  It was using her iPad as incentive.  She melted down when she had to take a break from it for the first bite and could not pull herself out of it.  After meal #2 we checked into one of the hospital resource center’s sleeping rooms for a nap.  (Now I can say I stayed in a room you order by the hour. ha!)  The volunteers gave her a choice of a stuffed animal to keep and she selected a pig with wings. (waiting for the train)  “So you want me to eat eggs?  When pigs fly!!!” When it was time to get up she was grumpy and was in meltdown before we even started the last session.  It wasn’t about the foo[...]



Feeding School

2013-08-09T22:41:00.944-04:00

Sometimes kids don’t eat.  I’m not referring to picky eaters who hate lima beans. (Doesn’t everyone?)  I’m talking about kids that for one reason or another have serious eating problems not caused by lax parenting or strong wills.  Some kids require being fed through a g-tube.  Others like Sophie and Alexander start out eating a wider variety of foods only to narrow their preferences down and then subsist on these same few foods every.single.day. Sophie and Alexander both eat a small variety of crackers and chips.  Sophie’s favorite is baby goldfish crackers from Pepperidge Farm, (must be baby goldfish as she gags on the regular size), but no broken crackers.  Alexander prefers BBQ Pringles.  They both love popcorn and chocolate milk, though Alexander must have his slightly warmed up.  Cold drinks bother him.  They also both refuse nearly all fruits, vegetables, and meats.  The only exceptions I can think of are the smooth fruit medleys that come in squeezable pouches that Sophie occasionally eats.  We call them squeezies.  Alexander will eat hotdogs or chicken McNuggets (must be McNuggets) from time to time, but mostly he eats peanut butter sandwiches (no jelly) on wheat with the crusts cut off.  He doesn’t like meat now that he knows it comes from animals and complains that it makes his tongue feel funny. Sophie had her first appointment with the children’s hospital Feeding and Swallowing specialists in September of 2012.  Yada yada yada, it’s now August 2013.  Alexander and Helena are enjoying an extended visit with the family in Iowa so that Mark and I can focus on Sophie.  She began an intensive outpatient program at the children’s hospital on Tuesday, 8/6.  For the month, Monday through Friday from 9am-5pm we will be at the Day hospital participating in the feeding program.  We hope that Sophie can learn to eat and that we can learn how to help Alexander as well.  Sophie is allowed only 4 ounces of chocolate milk in the morning at home.  Then at 10am, 1pm, and 4pm she is with a feeding therapist while we watch behind a two way mirror.  During week 4 Mark and I will begin training to feed her ourselves.  In the evenings at home she can eat anything as long as we log it and she must drink a specific amount of liquids.  The plan is extremely regimented, time consuming, and exhausting.  It is also extremely successful. Tuesday was Day 1.  The lead feeding therapist (we’ll call him P.)  and I observed as Mark attempted to feed Sophie.  This gave P. an insight into her food avoidance behaviors.  The rest of the day was mostly meet and greet with tours, a session (for us as parents) with the psychologist, a vitals check and physical exam.  Soph will be weighed weekly and her calorie requirements while at home adjusted based on her consumption at the hospital.  Her team consists of a lead feeding therapist, a team of feeding therapists, a social worker, psychologist, nutritionist, physician, an occupational therapist, and medical and psychology students. On Day 2 P.  introduced the rules to Sophie, which are pretty simple.  Eat your bite = get to play with your preferred toys and receive praise.  Don’t eat = you will be helped to eat.  Keep rejecting food = no play.  There’s more to it of course, but it focuses on lots of praise for compliance while ignoring noncompliance at first.  If noncompliance continues, then they might use hand over hand to get the f[...]



Summer Wind

2013-07-22T10:07:44.143-04:00

Mark’s paternal grandmother Margaret went to bed as usual on Friday, July 19th.  My birthday.  Sometime in the night she crossed over, warm in her bed.  Though she was 92 her passing took us all by surprise.  She had been doing so well.  It was exactly the way she wanted to pass.  She told us so.  Can you imagine, one moment here and the next – gone?  We should all have such a sweet sending off.

Our hearts and thoughts have been in Iowa since we got the news.  In an effort to celebrate life and recharge our batteries, we headed off for a day at the Shore.  Ocean City, NJ never disappoints. 

embedded video below or for the link, click HERE

In the coming weeks we will make the 18 hour drive to Iowa.  We will attend Mark’s 20th high school reunion, visit with family and friends, and then Alexander and Helena will stay in Iowa for a long visit when we return.  Sophie will enter an intensive feeding program at the children’s hospital from 8am-5pm, Monday – Friday for the entire month of August to train her to eat.  Sophie and either Mark or I will be at the hospital for the duration. 

We are in the midst of grief and apprehension, yet all we can do is move forward.  We boogie board.  We body surf.  We build sand castles and work so hard to create memories filled with joy for our children.




Wood Rot & Carpenter Bees

2013-07-03T19:37:31.715-04:00

When we bought our home two years ago we didn’t have rotten wooden window frames, or so we thought.  Being from the midwest, we were unfamiliar with the damage that carpenter bees can do on fascia boards.  We would quickly learn about both. When a part of a window frame swung off the house this spring, we knew we had a problem.  When we were bombarded by low flying Cessnas (dang loud, dumb carpenter bees) and had to avoid their falling larva from the roof (yuck), we took a close look and found that they had pretty much destroyed a number of boards at the roof line by drilling holes for their nests. Grumble, grumble.  After taking a few bids, we settled on a company called PJ Fitzpatrick to help us.  We would need the rotten wood replaced, new gutters, soffits and fascia which would be capped (but with wood grain design) to prevent the dang bees from being able to nest and to protect the wood from rotting again.  This type of work is way above our skill level so we were happy to let the experts have at it.  Frankly having professionals help us makes me feel like I’m actually a grown up.  Weird, I know. They finished at 5pm today, just in time for us to set up for our 4th of July party.  They got the job done in two days and spent much of it working in the rain.  The crew of hunky Russian guys were skilled, polite, cleaned up after themselves, and I highly recommend them.  I sent them home with goodie bags of left over candy from Sophie’s 6th Candyland theme birthday party (which will be another post as soon as I get more pictures from the other parents). So before I put up our decorations for the party, I decided to quick post the before and after shots.  The transformation is amazing and better yet, Mark should have no reason to be on the roof spraying the dang bees!  Peace of mind, baby. BEFORE *basement and 2nd floor windows had horrible wood rot unrelated to the dang bees.  Look at the damage the dang bees did to the wood! View Full Album AFTER So pretty! View Full Album [...]



Ladies Who Lunch

2013-06-08T15:54:32.466-04:00

Helena, (A.K.A. the Schmoog or Schmoogie) and I had a great day together.  It started in court for my hearing to contest two tickets related to our annual van inspection and emissions certification.  She was great and charmed the police officer that we worked with.  We won our appeal! After our brief court appearance, we decided to hit up our favorite thrift stores.  Mark, myself, and Helena love thrifting.  To us it is a treasure hunt and an adventure.  It’s not wise to head out with a particular item in mind, but rather a “let’s see what they’ve got today,” attitude.  Helena and I like to peruse the toys, jewelry (pins/brochures in particular), hats, books, and antique furniture.  I also love to find the exceptionally strange or unique items that pop up from time to time. After a quick deposit at the bank between thrift stores, I decided to take us out to eat for lunch.  No place would suffice except our favorite Indian cuisine restaurant, Ekta.  If you know our family, you understand that Sophie and Alexander have very limited foods that they will eat.  Mark, while he has expanded his palate considerably in the last decade, is still a mid-western meat and potatoes guy.  Schmoog, however, enjoys a wide variety of food. As we waited at our table by the window, she breathed deeply and listened closely to the music.  She exclaimed her joy with the rhythm and declared that the instrumental songs must be about Jesus.  I marvel at the way her mind works.  The smell overwhelmed her and she became patiently impatient for our meal. We started with vegetable samosas with mint and tamarind chutney.  Then, we split basil naan, basmati rice with chicken tikka masala and saag aur paneer.  “MmmmMMMmm,” she declared over and over.  We stuffed our bellies and she delighted over a simple slice of orange.  Enough was left over for 2 more meals.  Yum.  As we ate we started getting texts, fb posts, and phone calls about the tragic building collapse in Philly.  A building adjacent to the Salvation Army Thrift Store collapsed and trapped a number of people.  I had recently posted on fb that we were thrifting and people were worried.  Have I mentioned lately how much we love that we are loved? Logy (loooo-g-E means happily stuffed) after our feast, I thought we should head home for a nap.  Instead Schmoogie asked (repeatedly) to go to a candy store.  So we did.  On the drive home she munched on Swedish fish and I on a dark chocolate covered graham cracker.  Then we snuggled and napped.  We needed this kind of low key day.  I watched the 11pm news conference that night with Major Nutter about the building collapse who said, “We are a pretty tough city and we are quite resilient.”  Nonetheless our prayers go out to those who are seriously injured or who lost loved ones. [...]



Cub Scouts Awards

2013-06-04T21:56:11.089-04:00

We enrolled Alexander in Cub Scouts in the fall.  As a Wolf he interacted with new and old friends and learned new skills.  Tonight we had our end of year awards ceremony and graduation to the next level.

height="225" src="http://www.youtube.com/embed/vxwJesx6OO4" frameborder="0" width="400" allowfullscreen="allowfullscreen">

This is the face of pride in accomplishments.  He’s now a Bear and we are excited to continue with scouting.




Making a Difference Award

2013-05-25T19:13:54.889-04:00

The following is the text of the Delaware County Right to Education Task Force nomination for a Making a Difference Award that I submitted for Sophie’s friend Eliza.  The Making a Difference Award recognizes staff members and students who have gone out of their way through their work, support, or friendship to be accepting, understanding and make sure to include children of all abilities.  “My daughter Sophie, who is in kindergarten at XXXX Elementary, happens to have a developmental disability. Her placement is in the regular kindergarten classroom with supports and services pushed into the class. As excited as we were about our daughter going to school, we were also nervous. Would she be happy? Would she make friends? On the first day we instructed her brother Alexander, who is in the 2nd grade, to sit next to her on the bus so that she wouldn’t be alone. He held her hand and the two of them got on the bus together. From day one Sophie and Eliza became friends. Eliza is a fellow kindergarten student who does not have a disability. I have watched how naturally this friendship developed into something really special and ordinary at the same time. Parents of children with a disability can relate that the most basic experiences of life don’t always come easily for our children. Having a true friendship is something we dream of for our kids, but often fear that it might not happen.  Our first clue that kindergarten was going to be ok was during the first week of school. As Alexander and Sophie boarded the bus together, we noticed a group of her peers sitting in the front seat next to Sophie’s safety seat. They were excited to see her and clamored over which one of them would get to sit next to her. The same thing happened shortly afterwards when Sophie arrived at Back to School Night. We watched as Sophie ran off with her peers, leaving us behind. It became routine and was apparent that these friends were in it for the long haul.  Every day they are excited to sit with her on the bus. Eliza, in particular, has a special friendship with Sophie that I’ve been blessed to quietly witness. On the many days that Sophie has stayed home sick this school year, as we said good-bye to Alexander on the bus Eliza was visibly disappointed and asked about her friend. In class, Eliza and Sophie are frequently together. They often sit close during story time and next to each other at the tables during projects. When it is time to put materials away, Eliza gently guides Sophie to their cubbies as they scamper off to the next lesson. During one lesson, the children were to draw a picture and write a story. Sophie worked with her aid while Eliza sat next to her. Eliza drew a picture and wrote about the two of them playing together. This friendship extends outside of school as well. When the girls are at a birthday party, for example, they play together beautifully. Eliza is a beautiful child. She accepts Sophie and understands her in a way that I as her mother or the professionals that work with Sophie can only strive to see her. Eliza does not see through a lens of ‘disability.’ She does not care that Sophie has a very limited vocabulary and learns differently. She knows nothing of IEPs, social goals, or modified curriculums and yet she can teach us all about inclusion because it has come naturally for her. She has no idea that her love of my daughter has been a dream realized. She’s a little girl who love[...]



Our New/Old Normal, part 3

2013-05-24T14:31:37.594-04:00

continued from part 2 I went back to the office and as I worked my mind kept churning the same questions over and over.  How could I have missed this?  How could we have explained away so many things?  How could we look to his father as a model for why it was normal?  And then it hit me.  Hard.  I stopped typing.  I stopped breathing and began to shake.  I knew the truth before the thought, which felt gently whispered in my ear, was fully formed. I sent Mark the following text to which he responded immediately, “yes.”  “Mark, have you thought about whether or not you or I have Asperger’s?”  I couldn’t just say, “Dude, you totally have Asperger’s,” could I?  He responded, “Yes.  Most definitely.  Did it ever strike you as odd that I can concentrate on writing a vodka book for years on end, or focus on driving for 20 hours straight, but I can’t seem to keep straight our schedules one day to the next?  I’ve certainly thought about it.” That was the moment.  The big one.  The ground shifting under my feet insight to the reality of our lives that have completely changed my view of the vast complexities of human existence and our family truths.  As it turns out we know quite well what Asperger’s looks like and it doesn’t resemble Max from the great tv show Parenthood AT ALL.  Except a little, depending on what you’re looking at.  A flurry of texts between myself and my husband continued through the day recounting his traits that seen through the lens of Asperger’s made perfect sense.  These are things that I both love, love, love about him but also the things that drive me up a wall backwards.  Mark completed a series of Asperger’s questionnaires and would text me the results each indicating a strong likelihood of Asperger’s with something like, “Huh. Who knew?”  There is a reason we think of Alexander as little Mark.  He is little Mark.  He called his mom who said she understood some of the things she saw as he was growing up and beautifully said, “but this doesn’t really change a thing.”  Except it does.  It changes everything and I will be forever grateful that my son was diagnosed with Asperger’s.  Now we can learn more about it so that we can support him in the ways that he needs.  Facing this reality which was at first a trip to Hell is now just our new/old normal.  The best part, the BEST part is the fairly certain conclusion that we (admittedly as lay people) came to about Mark likely having Asperger’s as well.  He says this is probably why it didn’t faze him much when we learned about our son’s diagnosis.  Somehow he felt the truth of it on an unconscious level and KNEW that despite the challenges, the benefits and joy are real.  In that millisecond when the thought was whispered in my ear, my heart lightened.  My grief left me and I began to laugh so hard I cried.  People say all the time that people with Asperger’s can lead happy and full lives and we KNOW this to be true.  We live it every day.  Just ask my husband, the mighty professor, author, hilarious, affectionate, kind, father, and friend about his happy and fulfilled existence. Our journey to accepting (with relief and even joy) our son’s and possibly my husband’s diagnosis of Asperger’s coul[...]



Our New/Old Normal, part 2

2013-05-24T14:34:42.323-04:00

continued from part 1 It took a couple of months to finish and the final report itself is 21 pages long.  The school psychologist had Alexander self report, she had his teacher, OT and ST therapists complete evaluations, she conducted classroom observations, and Mark and I complete questionnaire after questionnaire.  The tests bore out what we already knew.  His IQ is 111 or above average.  He has a superior vocabulary but delayed processing speed.  Areas of significance include emotional control, initiation, working memory, planning/organizing, organizing materials, and monitoring.  ADHD was ruled out but attention problems were highlighted as well as adaptability, functional communication, attitude towards school, and activities of daily living.  Perplexed by his speech pattern, his ST called a stuttering expert at CHOP who indicated he has seen the same pattern in people with Autism.  This was about the same time that the latest series of parent questionnaires started to scare me.  His pediatrician did not think it was ADHD and began asking questions that scared me.  We were headed in a direction that I was desperate to stop. That’s when we got a phone call from the school psychologist and speech therapist.  They didn’t want to send home the parent questionnaire for Asperger’s without giving us a heads up, which was a good move.  Three days later the reports were completed and we were told that “results of the social-emotional and behavioral assessments along with the testing results, the data from the questionnaires, as well as the observations indicates that Alexander demonstrates behaviors that are consistent with the characteristics of children with Asperger’s Syndrome.”   I spent the weekend alternating between crying, raging, drinking wine, cursing God, painting my kitchen blue, researching Asperger’s, bargaining with God, searching for ways to blame myself, and then landed firmly in denial.  Mark was unfazed and that fazed me. How could this possibly go unnoticed for so long?  Taken separately each of the traits that I now suspect are tied to Asperger’s could be explained away.  Much of them were exactly how Mark was as a child.  The trains obsession, the picky eater, the meltdowns and on and on.  I became depressed and felt like such a failure.  Still I dragged my butt to work and commiserated with my colleagues who also work in the disability field.  It was a miserable few days and I was so disappointed in myself that I couldn’t stop looking at my son differently.  Not negatively per se, but with eyes that know too well the struggles that go along with disabilities and the immense load of work that had just landed on my shoulders to ensure he will have everything he will need. continued HERE [...]