Jodi’s Going To Africa 2020

What’s Africa 2020?

It started a few weeks ago actually.  I was watching the news, and there was a news story regarding a young lady climbing both the incline and Pike’s Peak with no legs.  You can read about her here.  In a news interview she stated her next goal was to climb Mt. Kilimanjaro.  It peaked my interest, because I can’t really run anymore, I wanted to find new goals to achieve.  So I started searching the internet, and I found this article on a cancer survivor, who climbed Mt. Kilimanjaro with his doctor.  And then I got really interested.  I googled a bunch on Mt. Kilimanjaro, and about what it would take to climb such a mountain.  My dream has always been to go to Africa with my camera, and take pictures of my favorite animals in the wild.  This put a new dimension to my dream of going on an African Photographic Safari (I would never go on a hunting safari, as I do not believe in shooting guns).  I am going to climb Kilimanjaro in 2020.

Why Africa Though? And Why 2020?

I share a lot on social media, but not really a lot.  I always have had some odd connection to Africa.  I don’t even know how to explain it.  The first book I read was, “Born Free.”  I have a vast collection of things made in Kenya, if I see jewelry made in Africa I buy it.  My favorite rides, parks, restaurants, and resorts at Disney World are at the Animal Kingdom.  I love the culture, the food, the people, and the animals in Africa.  And before the Animal Kingdom in Disney opened, I loved the African stores at Busch Gardens in Tampa.  I have wanted to visit the real thing since I was eight.

My favorite animal has always been a lion.  My favorite Disney movie is “The Lion King,” my favorite musical the same.  When I was 21, I had my first, and only, close-encounter with a lion, I got to pet and hold lion cubs in a Mexican Zoo that had not yet opened.  The lion was just like a cat, it snuggled in my arms, and purred.  I will never forget it.  I have always had a hunger to see the Lions in their natural habitat.  I see myself as a Lion has I battle cancer.

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I chose June-July 2020, because this will give me enough time to heal my body, mind, and spirit.  As of right now, my cancer is on the decline.  I am receiving an experimental treatment that has made me feel better than I have in a LONG time.  This will give me the time to train, to do other climbs.  There are 14 peaks in Colorado that are above 14,000 feet.  My intention is to do a few of those before attempting my big climb.

Besides healing my mind, I have a LOT of work to do on my body.  I have been given steroids for most of the last two years.  I gained weight, a lot of weight.  I am trying to get down to a reasonable weight.  I also have start eating healthier and I have to train.  The training alone will help me get down to a fit weight.  I plan on starting to run again, just not marathons.

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I look forward to showing everyone my progress, and pictures as I make my dream of going to Africa, seeing her people, cultures, and animals a reality.

 

The Road Ahead

Hello Friends,

The last six months, have been a full six months.  Full of awesome highs (nearly no evidence of disease, and starting a maintenance drug), and full of valley lows (losing one of my closest new friends to this awful disease).  After Christmas, my blood counts were so low, that I thought I was going to die (literally).  I never have felt so close to death as I did between Christmas and New Years.  I even started to write letters to my children regarding how I wanted to be remembered by them.  I had consistent bloody noses that would take hours to stop up.  I eventually went into the hospital, and got some blood.  I was counting down the infusions until the end of Gemzar and Cisplatin– the beginning of February.

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Mountains Near Breckenridge

In February, my sister-in-law and nephews came out for a visit.  Colorado was not kind to them.  My youngest nephew started throwing up before the trip, and my eldest nephew, who has Type I Diabetes got food poisoning towards the end.  The poor child couldn’t get out of bed.  I was running a fever, had a cough, and felt generally shitty.  I knew since my counts were low, it would take forever to recover from my cold, which ended up being Influenza A (found that out after my son caught it).  After we both got over the flu, we ended up going to Snow Mountain Ranch (YMCA of the Rockies), and rented a nice secluded cabin in the woods.  I still was not up to skiing, and hung out mostly in the lodge.

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YMCA of the Rockies

In March we found ourselves back at Disney World and visiting my mom for Spring Break and Easter.  I did not bring my camera then, but I have a ton of beautiful iPhone pictures of Disney.  When we returned to Colorado it was time to trek up to Denver and see Dr. Corr at UCH Aurora campus.  We found out that my CA-125 had increased to over 600!  Since my symptoms coincided with a possible aneurysm, I was given an emergency CT Scan.  I did end up getting my Avastin infusion (maintenance drug), and the next day found out that my two spots had turned into 5 spots with the largest on my rectum.  On April 7th, I signed the paperwork to start a clinical trial.

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Crestwood Falls at Crestwood State Park

I made several trips to and from Denver to participate in the clinical trial.  I had a CT scan, a brain MRI, a biopsy, and more vials of blood drawn than one could imagine.  By the time I began the trial my CA-125 was over 900.  The clinical trial is a immunotherapy drug called Durvalumab and a vaccine therapy (immune system booster) called IPH2202.  The Durvalumab is supposed to highlight a protein to the immune system in the cancer, and IPH2202 is supposed increase my bodies immune reaction.  So far the side effects are very minimal, and I feel great.

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California Poppies Growing Wild

As of today, I have had two infusions.  I have no increase of cancer symptoms (the symptoms have remained stable– no increase is a very good sign, as I have not had chemotherapy in over 4 months!), I have good energy, and I feel wonderful.  In two days I will be embarking on a photography adventure road trip, and I will be documenting it photographically and on my blog!

We are traveling to the Grand Canyon.  I will be witnessing the a sunrise over the Grand Canyon.  After that, we will be traveling to Las Vegas.  Where I will be photographing the strip, going to the fountain show at the Bellagio, and the pirate show.  I, of course, will play a few games of chance ;).  From there I will be heading on Rt 66 to California.  I have never been on the West Coast.  We will be in Malibu, at Disneyland, visiting an old friend from our time at Vilseck/Rose Barracks, and then trying to see a few stars :D.  Then from LA, we will be driving north along the Pacific Coast Highway to San Francisco (some of the highway is closed, but I’ll see enough of it.  From San Fran, we will travel northward to the Redwood National Forest, where the Ewoks live :).  Finally, we travel back east going through Oregon, Nevada, and Utah to the Arches National Park, and back home.  My goal is to master the manual setting on my camera.

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Purple Wildflowers

Cancer has given me a new appreciation for life.  It is hard to know that one day I will die from this disease and follow the path of my sisters before me.  Life is fleeting…

Rest In Peace:

Jessica Gladstone
Jann Lenhart
Tracey Young
Sue Alvarez
Lori Hamilton
Sarah McGerrtrick
Eileen Albert
Betty Burnell
Leigh Reel English (Liver Cancer)

Song of the Post:  “I’ll Stand By You” Rachel Platten

Losing My Religion

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“That’s me in the corner, That’s me in the spotlight, Losing my Religion…”

Move over Rover, Cancer has taken over…

I’m almost done with my fourth line of treatment (technically my third line of chemotherapy).  This one is doing what every other regimen has done, kept me stable, and kept the cancer at bay.  I should be satisfied, but I am not.  I want it gone.  Since camp I have lost four friends to this insidious disease.  I hate what it has done, not just to me, but to my family.  Things that are certain, are no longer certain.  I think the most disruptive thing it did was cause me to question my religion.

I have always heard that God never gives you more than you can handle.  Then the first uncertain thing happened.  My son was diagnosed with autism when he was two.  I read a blog post, or a poem, called “A Trip To Holland,” so instead of Italy, we are going to Holland, land of Tulips and wooden clogs.  Holland had many adventures– to include adverse affects from immunizations, seizures, child abuse at school, etc…  But there was always God and Jesus to take the burdens.

Then my dad died.  It was unexpected, but expected.  Dad was not very good at taking care of himself.  He believed in miracles.  He made his dreams come true.  He lived in the best place in the world, Disney.  He loved and lived.  He passed away from a heart attack. This put our family into a tailspin.  I stayed with my mom a few weeks, and my daughter stayed there for a little bit longer.  My mom was thrown into widowhood, and I was thrown into a slight depression.  At this time, I started to notice that my back pain from 2014 was returning.  I thought it was from switching from outdoor running to treadmill running in the humid summer.

In October, my daughter started stating that she was going to commit suicide.  She would have tantrums that turned violent.  I was kicked in the face at one point.  She started to put on weight.  It was unreal.  We eventually had to have her hospitalized at nine years old.  We discovered that she had ADHD.  Again, ADHD is something we can handle.

In November and December, I started to feel more and more symptoms.  I felt tired all the time, I would go running, and feel done.  I wrote it off as stress, depression, whatever you can call it.  I also felt a huge amount of guilt.  I was too tired to do my normal routine.  Looking back on the schedule– I got my daughter into counseling appointments, Occupational Therapy, sleep studies, and eating counseling; Ryan needed ABA therapy, OT, ST, and Neurology every three months, which was a drive to Pensacola Beach; and I was seeing a personal therapist and marital counseling.

In January, I went in again to complain about whatever was going on.  I was tired, I was having difficulty breathing, I had a backache.  Something was wrong.  I ended up leaving in tears, after the doctor forgot about my appointment.  I switched to Tricare Standard.  Saw a new doctor.  She ended up suspecting that I had a silent heart attack.  I had an odd heartbeat, and she could hear fluid in my lungs.  I got a lung x-ray.  I had a large pleural effusion in my right lung.  Within two days, I was diagnosed with cancer, stage IV.

Every day since then, I prayed and begged God for my life.  I prayed that He would cure me.  That He would take this burden from me.  I prayed that my children would not be left motherless.  I have seen, and experienced what happens to children when a parent dies.  Even at 40, it is difficult, but kids are 12 and soon-to-be 14.  I can’t take the thoughts what it’s going to be like without me– I know it sounds selfish, but that’s the thought that depresses me the most.  I don’t want to die early.  I want to see the milestones– I want to see my son walk the graduation walk, I want to see my daughter get into her dream college (which right now is “the best college ever” for math and engineering), I want to see my daughter married, I want to meet my grandkids.  I don’t want to be the picture in the corner, or the person that people will tell my kids to get over already (I have heard someone say that to a child of a cancer patient).  I don’t want them to tailspin out of control.  And God is not listening.  He has stolen four friends on this Earth.  And now none of the treatments are working completely, but it is not gone.  I hop from one treatment to another.  I have been abandoned and my children are being abandoned.  How can I believe in someone who is not supposed to give me more than I can handle, when I cannot handle this?  How can I feel that He has this, and the burden is not mine, when it is hurting my family?  So here I am sitting in my corner, in my spotlight, slowly losing my religion…

I Have A Confession…

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I’m going through a really dark period right now.  I have lost my mojo.  I have lost my desire to write anymore, my desire to take photographs, and a lot of happiness.  I am doing fine physically.  My CA-125 (the cancer marker) has been slowly decreasing every three weeks.  I am going to be taken a much needed break, and see if the mojo comes back.

Just an FYI– if you are a caretaker, or family member of a cancer patient, do not do an emotional intervention with said cancer patient in the middle of a harsh chemotherapy, particularly when said thing you are intervening about is five years old…  The longterm effects are incredibly negative.  Thanks…

 

Oh Deer!

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When we first bought our new home in Colorado, I was so excited about all the wild life that our neighbors talked about.  Of course they were a little less than excited about some of the animals that visit our home.  Particularly, the Mule Deer (a little larger than white tail), that often rub their antlers on the budding trees.  But supposedly, we have a moose cow, a bear, and the deer.

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Last week, I got my 30-something-th chemotherapy infusion, and I was dragging after getting a wonderful injection of neulesta.  I laid down to take a nap, but Thor, my Golden Retriever, decided to bark and bark and bark.  I was irritated, so I yelled at him to STFU.  Yeah, I know my language isn’t the best when I feel like I do post-chemo.

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My daughter said, “Mom, get your camera, there are deer looking in the window.”  Deer looking in the window?!  Why would deer want to look in the window. Sure enough, I looked out my window, and saw the two doe above eating grass in our neighbor’s yard.  I snuck outside, and captured these photos of the beautiful buck that accompanied three doe.

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I’m 90% sure this is lovely 10-point buck that ruined one of our brand new pine trees that we planted earlier this year.  But who knows.  He sure liked to pose.  I got about 2-3 yards away from the herd before he pushed the doe away, and took off across the street.  I did manage to get a few more pictures.

I took a total of 30 pictures…

Some prints are available for sale, and I am making a new 2018 calendar.  My photographs are available for sale at Jodi Vetter Photography, the calendar, and other products will be soon available on a new Etsy Storefront.  A percentage of all sales goes towards Camp Mak-A-Dream outside of Missoula, MT.

New York State of Mind

About two weeks ago, we just returned from our second trip to New York City.  The last time I had been in New York, I was the running the marathon.  I had a blast.  There was no cancer, no steroid weight gain, and it was me, my husband, my camera, and Les Miserables.  This time, I had some new lens, and got to see some new sites!

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A few days before we left, we had a snow storm.  The weather was completely different in NYC than it was in Colorado.  While it was cold and snowy in Colorado, it was warm and humid in NYC.

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We stayed in the Fabric District, closer to Macy’s and the Shopping District near Time’s Square.  The buildings were very interesting here.  The first night we hit the theater, went to Bryant Park, and went to The Palm West Side, where I saw my only celebrity– The Dude From Dateline NBC (Keith Morrison).

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My favorite addition to Bryant Park was the new “light balls” amongst the mums in the park.  I wanted to go ice skating either there, or in Rockafeller Center, but due to my blood counts, I had to forgo any kind of things that could cause internal bleeding, and me on skates can definitely cause me bleeding.

The next day we walked to the race expo at the convention center (near Marvin Gardens). NYC does have a LOT of green space, and there were still a ton of flowers growing in the green spaces.  Mums, Latinas, and a few wild flowers here, and there.  I have to say that the Expo was really hard for me.  I spent most of it mourning my “old” life and feeling sorry for myself.

 

On the way back to the hotel, we took a detour through Central Park.  We visited the finish line, and I took some pictures of the local fauna.  Lots of rats with wings and little songbirds.

More leaves, more squirrels.  We hopped onto a subway, went to our restaurant for the pasta feed.  I had the most wonderful Tiramisu, and grilled chicken with a mushroom sauce.  Needless to say, we ate our way through New York City.

After the race we went to St. Patrick’s Cathedral and One World Trade Center.  Its was truly amazing to see both buildings.  I got to play with my panoramic lens.  Going back to the Trade Center was really cool.  The first time we had gone to NYC, the building was not done yet, and now you can travel to the top.  It was state of the art trip, and the new shopping mall underneath is a real wonder.  St. Patrick’s was absolutely gorgeous.

When God Paints The Sky…

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I have been blessed to live in areas of the country where the sunsets look like God is painting the sky.  He uses a retinol of colors, his pallet is amazing.  I have taken more sunrise and sunset pictures than any other.  Most of them are without filter.  Today, I’m going to share a bunch of them with you.  No matter where you live, I find that watching the sun slowly creep up, and down to mark the beginning and end of days is one of the most beautiful natural thing in the world.  Enjoy :).

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Sunset from my deck

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Panoramic on the Bay in Florida

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Sky on fire in Colorado

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Sky on fire in Florida

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Sky on fire at my mom’s house in Orlando, FL

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Palm trees at sunset.

I love sunset and sunrise pictures.  My next goal is to conquer night-astro photography.

 

 

 

 

 

 

My Sanctuary…

My goal for this month was to write more, unfortunately, desire, health, and my heinous schedule has curtailed my efforts.  I made six trips to Lone Tree Cancer Center to get my infusion, only to have those infusions cancelled (until this past week), then I spent two days of my chemo recovery trying to stay awake long enough to entertain two children.  Needless to say this week hasn’t really gone as expected.  Normally, we do a Sunday morning hike, but my desire to walk through the woods right now is non-existent.  Further receiving distressing news about the health of one of my sister-in-laws didn’t make me feel like doing much.

So I am going to post some pictures of a recent hike we took to Catamount Falls, as part of the Catamount trail.  The trail itself is 5.5 miles (one way, but I could not do the entire hike, so I did just the Thomas Trail where the falls are visible.  These pictures were taken a few weeks ago, so the leaves are in full bloom.  I didn’t realize how much I missed four seasons until living in a state with one season.

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The first thing I noticed on this hike is the interspersed maple and aspen with the pine trees.  Pine in Colorado burns easily, but also grows easily, so when the fires went through a few years ago, the pine still thrived, and the hard woods did not.

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Near the streams, however, there are plenty of young maple and aspen.  We have a few growing in our yard now, and the colors have changed from a dark brownish to a golden red.  But my all time favorite are the cedar/aspen.

 

I love the golden colors.  They just make me excited for warm coffee mornings, hot chocolate, ‘amores, and the trappings of winter that are just not the same in Florida.  Not that I don’t miss flip flops, and eternal summer, but it for this Yankee it just isn’t the same.

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Florida does have it’s share of water, but there is nothing like a cool stream falling along creaky rocks, with falling leaves, and a brisk breeze.  I absolutely loved watching the water fall down 30 ft rock cliffs, and hearing the sounds of the brook near the valley.

I call Colorado my sanctuary, because I feel so much like home here.  Among the mountains, wild flowers, streams, and clear air.

And finally after several miles of hiking, sweating, and stops of sharp hypoxic breathing, we reached the bottom of the valley, and followed our stream back to the car.  There I reveled in the pictures that I took.  I realize that I love photography, because I love going back, looking at the streams, sticks, trees, flowers, and remember the smells, the feelings, and the pure joy I have during my hikes.  These are my happy times, and this is my sanctuary.

 

A Tale Of Two Schools…

There are not going to be any pictures with this story.  It is soon going to be written in a paper.  I’m risking not being able to be represented by a lawyer by blogging about this, going to the papers (which I tried to do in the beginning), and by coming out.  There was an injustice done on behalf of my son, and I want to warn other parents that this could happen.  Especially, parents with children on the autism spectrum (particularly those with non-verbal or barely verbal children).

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This is a note from my son’s school in 2011.  It’s a nice note, if you didn’t read the entire notebook, and notice that every single note from September to November was essentially the same.  And even then it looks harmless.  The teacher has very pretty handwriting and the occasional smiley face would mislead you.  The story starts in May of 2011.

My husband was at some school for the Air Force, I call it “Major’s School,” because even though I am a veteran, I hardly cared for the “continuing education” or aka “officer indoctrination.”  My daughter attended a very nice Preschool, I don’t remember the name off the top of my head, and my son went to Beavercreek Main.  We were amazed at Beavercreek Main (in Beavercreek, OH), because in VA, we were told to send my child to a private special needs school.  We were happy with the self contained special needs school, until we went to our first meeting to get my son enrolled at school, and we were asked, “What do you want on his IEP?”  I was spitballing, and answered, “I want him mainstreamed with an aide.”  Figuring that that was some kind of pipe dream.  I was waiting for Ed McMahon to tell me to “Reach For The Stars…” Though he was long dead in 2011.

He had the best teacher, Mrs. Murphy (later teachers we found would be equally great).  The thing about my son, is he has a way with people.  I know perhaps I am biased, but my son gets people to like him. He touches people in a way I just cannot explain or imagine.  Other people can vouch for it.  Mrs. Murphy gave us everything we asked for.  He had a dedicated aide, who absolutely adored him.  He was in mainstreamed, he got asked to birthday parties.  He started to read spontaneously.  He was learning to write.  Everything was going great.  That fateful May, we found out that our orders to Barksdale AFB were denied, and we were going to Eglin AFB, FL.  I thought I would love FL, and I did love FL.  Even though Florida was where my dad died, Florida was where this story took place, and later Florida was where I was diagnosed with cancer.

We were excited to move to a tropical tourist trap, looking forward to our many visits with the Mouse, and excited about year round summer.  We bought a beautiful home in a town called Niceville.  You can’t lose with a town named Niceville!  It was like a dream. We had visited the school districts main office, because when you have a child with autism, that’s what you do.  We handed them a newly minted IEP (Individual Education Plan), and we were told that our children would be attending James E. Plew Elementary.  How can you disagree with a beautiful school with gardens, lizards, and butterflies.

A week before the packers came, we got a phone call.  The school district had changed their collective minds, and had told us, that the school was not staffed for our son, and he would be instead attending Lewis Elementary School.  Less than thrilled with that assessment, we said, “OK,” because we were promised that his IEP would be followed.  We got Niceville, and found out a few short months my husband would be returning to Barksdale for upgrade training.  He would be leaving us for about three months.  Great, I can handle being a single mother for that long.

I went and registered my kids at their respective schools.  My daughter’s school, Plew, was great, I met her teachers.  They showed me the kindergarten classrooms.  She was tested, and all was great.  I went to my son’s school, and alarm bells rang.  I was not allowed to meet his teacher, because she was busy moving into her classroom.  I was not allowed to meet my son’s para, because she/he was not assigned yet.  I was not allowed to even see the classroom.  The principle was less than impressive, and I told my husband before he left for his upgrade class that I had deep reservations about the school.  NOTE NUMBER ONE:  If you have deep reservations upon first going to a school, do NOT enroll your kid there.

I ignored my instinct, and we enrolled my son there.  A few weeks into August, I FINALLY got a call back from the teacher, and they FINALLY set up a meeting with her.  We met in an office, and again I was not allowed to see the room, as it was not completed yet (mind you school was in a week).  I was again not going to meet his mainstream teachers, because they were not available (again alarm bells).  We sat down and talked about my son.  I told them that I knew that my child was capable of being a little brat, but he was a good kid.  He was off that day, because he was on a drug called risperadon, which affected his ability to regulate his body temperature.  I didn’t know this, but they were already formulating a case for my son to be placed in a self-contained classroom.

The evening before the first day of school, we visited the school, and were surprised to see that our son was going to be in a self-contained classroom with eight other children with significant disabilities.  It was a small room, it was a converted band room.  I was informed that my son was going to be sent into the first grade room ALONE, without a para-professional, and then pulled out if he acted up.  Which was NOT what was in the IEP they promised they would follow.  I was then informed that they were going to write a new IEP without testing my son, “To make the placement LEGAL…”  NOTE:  If they need to write a new IEP without testing that “to make the placement legal,” means that the school district has no f*$*ing intention of following the LEGAL IEP.  And again we should have instantly pulled him from the school district.

But we didn’t, instead both my husband and I decided that perhaps the school was right, and he needed a trial period in a self contained classroom to “get used” to the school.  My husband left the first day of school, and when my son got home.  The first of many negative notes.  About a week later I received another note.  My son had solicited a sexual act from another student.  Apparently, he looked her in the eye, pulled out his penis, and told her to “lick it.”  It was odd, because my son would not look ME in the eye.  He did have the tendency to pull out his penis, but it was rare.  And he would not engage in conversation with another human being, much less another child.  It was really concerning, because there is a history of sexual abuse in our family (long story, and I’m not going to write about it).

Anyway, I was terrified.  We were to meet with the school at the end of the week.  My husband came home early to attend the meeting.  We thought that we were going to be involved in a long investigation, because we both knew that a child, who is sexually aggressive is a sign of sexual abuse.  We went to the meeting.  I was surprised that there were just two teachers, no principle, no resource officer, and no other parents.  The teachers had said that they didn’t want it to become a big investigation and they didn’t want to involve the other parents.  They just wanted my son to wear pants every day at school.  I was suspicious, but my husband was amiable to their request.  I kept thinking to myself, if my son actually “did” what they said he did, then shouldn’t there be an investigation?  Is there something happening, or did something happen to my son?  Aren’t they mandated reporters?  Why wouldn’t they report my son’s actions to the police, because technically, my son committed a crime?  Why was this all fixed by being agreeable to wearing pants?  NOTE: If your child is accused of being sexually inappropriate, that is a SIGN that there is sexual abuse going on, even in autistic individuals.  Teachers are mandated reporters, those teachers broke a major law by not reporting suspected abuse.

So like good little automatons, we sent our son to school in pants.  The screaming, swearing, and other behaviors did not stop with pants.  Every single day there was a note in his backpack complaining about him– his behavior, his swearing, or his inappropriate behavior.  I got to the point were if I did his homework with him, he still would get an F.  There was nothing I could do that would satisfy them.  What’s worse, even though the notebook was full of frilly writing and smiley faces despite negative reports every day, the teacher started telling me that he was annoying, he was obnoxious, or that he was bad.  So every day I got the notebook full of negative reports, then I would be verbally reinforced with him being call obnoxious.  About three weeks after the whole exposing himself and soliciting a BJ from another student happened, he had a massive tantrum.  NOTE: If you are getting continual negative reports which are not adding up to what you are experiencing at home or in ABA therapy, there is SOMETHING going on.

The tantrum, though mentioned vaguely in at home notebook, was significant.  My son had a tendency to bang his head.  He normally did not bang it hard, or against hard objects.  At some point during the day, my son had banged his head against a desk 14 times.  He complained that he could not see.  The teacher in question hypothesized that he was “trying to get out of going to gym,” or that it was “pink eye” that he was treated for some two weeks ago.  She never intervened, she never called me when it happened, and she never sent him to the nurse when he complained he couldn’t see.  I called the pediatric clinic on base immediately after he was unceremoniously shoved into my car, and again the teacher complained of his annoying behavior.  The pediatric clinic told me to take him to the ER.  I did so.  The ER doctor hypothesized that Ryan had either bumped his cornea, or he had had a seizure.  Months later we discovered that it was a seizure.  NOTE: A child should not bump, bang, or otherwise hurt himself 14 times without intervention.  I specifically signed a release that allowed his special education teacher to perform a therapeutic hold if my son was a danger to himself or others.

Sadly, a few months later, it was confirmed that he had had a seizure.  Further testing from his behavioral therapy team indicated that he had regressed significantly.  When leaving Ohio, he was tested at functioning at just below grade level (kindergarten), after the head banging incident he tested at a 2-year-old level.  His IQ was at a 70, which was borderline cognitively delayed, it has since dropped significantly.  His IQ fell several points, and is now considered severely cognitively delayed.

We have since moved from Florida, and now live in Colorado.  My son is mainstreamed with an aide.  He has pull outs for Science, Social Studies, Art, and Music.  The reason I was told that he was never mainstreamed was because the kids would bully and tease him.  He has never been bullied here.  The kids know him and like him.  He is actually popular.  The only people I worried about bullying him were teachers.  The psychological staff, and staff at the school have made me feel more comfortable about his school situation.  This situation could have been totally preventable if the school district had just been forthright with their policies of self-contained classroom, and being sent to a separate school than what we were zoned for.  If we had been informed about the school situation before we had enrolled him.

IMG_1211

This is a note from the private placement we ended up placing our son in.  Notice the teachers have awesome handwriting, but it does not contain anything about his tantrums, him being inattentive, complaints about his behavior, nothing.  Nearly every day at ECAC my son came in happy, and he made progress towards his goals.  It has taken nearly four years for him to progress beyond functioning at a 2-year-old level, and now he has progressed to the point were he was when we arrived in Florida.

If you want to skip the long drawn out story, here’s the recap:

  1.  Trust your instincts.  If there are alarm bells regarding your child, their placement, or their behavior, dig deeper.
  2. If your child is accused of something completely out of character, or doesn’t make sense, ask for an investigation, particularly if your child does something that is sexually aggressive or inappropriate.
  3. When you have a non-verbal, or barely verbal child, and their behavior is drastically different between school, home, and therapy ask questions.
  4. A child should not be injuring themselves more than 1 or 2 times.  I understand kids are fast, but there is NO reason for a child to self injure 14 times with no intervention.  Further, if something does happen, which it sometimes does, request that the teachers administer first aid, send the child to the nurse, or notify the parent immediately.
  5. If there are negative reports, make sure the reports are actionable.  Teachers should not use words like irritating, annoying, or obnoxious.  If your child is being described in adjectives like this, then you need to speak to administrators.
  6. Report abuse immediately, and follow up.  The ER doctor submitted a DHS report, which was subsequently “lost” by the school district.  If I had followed up, the teacher would have been fired instead of promoted to principle.

My son’s case is finally getting the attention that it deserves.  There have been at least three instances of children abused at the different districts as recent as 2016.  I know of five cases of abuse before and after 2011.  The systematic abuse of non-verbal and non-communicative children in Okaloosa County has been occurring from before 2011-now.  Parents need to come forward, and tell their stories.

http://weartv.com/news/local/okaloosa-county-educators-arrested-for-abuse-of-autistic-child

http://www.crestviewbulletin.com/news/20170627/baker-teacher-charged-with-child-abuse

http://www.thedestinlog.com/news/20171011/state-steps-in-to-discipline-child-abuse-at-silver-sands

https://www.thepetitionsite.com/526/680/416/no-more-abusive-teachers/

http://www.nwfdailynews.com/news/20171011/jackson-wants-her-own-lawyer-district-would-foot-bill