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).

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.

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

 

 

 

 

 

 

 

 

I Am Groot

Photo courtesy of Disney and Marvel copyright 2014

I Am Groot

When I watch television, movies, and even the news in April, I see lots of stories and information about autism.  I am aware that April is Autism Awareness month, for my family autism isn’t relegated to one month, rather it is every day, every month, every year.  We are more aware of autism than the average family.  My son, Ryan has autism.

When I have asked people, who are not as aware as I am about autism, what they think autism is?  They point to characters on television shows, movies, and children and adults in the media, who have autism.  Nearly every single person, or character, with autism is high functioning.  Prime examples are Forrest Gump, Max from Parenthood, Dr. Latham from “Chicago Med,” even the kid who shot all the baskets, the kid who was voted homecoming king.  The media turns a blind eye towards people with autism, who are not high functioning.  My son is one of those people.  Until very recently, there are no mention of lower functioning adults and children in the movies, television, or even in the news.  In 2014, Marvel Comics finally produced a movie that showed a character with limited speech in a very positive light.

You may ask who?  My answer is “I am Groot.”  We first saw the first “Guardians of The Galaxy” movie a few years ago, and my daughter was the first to notice that Groot was my son.  She said that our family was Rocket.  For those that do not know comic book, Marvel, or the movies, I’ll explain.  Groot and Rocket are a pair of bounty hunters that are looking for Star Lord.  Groot is played by Vin Diesel.  Rocket is voiced by Bradley Cooper.  Groot is a large tree creature.  The only thing he says throughout the entire movie is— “I am Groot.”  His partner Rocket, a walking, talking raccoon, translates based on context, body language, and intonation what every “I am Groot” means.  That’s what we do with my son.  Our family has become master interpreters for our son.  We know the meaning behind every phrase.

My son on the other hand is just like Groot, from his mannerisms to his monotonous speech, but he is also like Groot in other aspects.  Groot defends his friends with ferocity.  He has a really wicked sense of humor, and pretty good dance moves.  At the end of the movie, Groot sacrifices himself for his friends.  He grows into a dome that protects the rest of the Guardians from dying while their ship crashes.  While he grows, he transforms the environment to a beautiful starlit dome.  And he says one phrase while sacrificing himself, “We are Groot.”  This statement makes Rocket realizes Groot’s intention, and he begs him not to sacrifice himself.  In the epilogue we see a new baby Groot, who dances and sings to “I Want You Back” by the Jackson 5.  Like Groot, my son is brave, strong, caring, with a wicked sense of humor, he is smart, and when he says something, often it is so profound and meaningful.

In the waning days of the month of April, I changed my profile picture to Baby Groot.  I have posted “I am Groot” (sometimes I include emojis to show my mood) at random times throughout the day.  I have responded to other people’s posts with “I am Groot.”  Most people haven’t asked me why, some think that I’m being facetious, sarcastic, or I’m just a moron.  To the few that have asked why, I messaged them my reasoning (I have also posted it on my wall), and I encourage other parents to do the same to bring awareness of children (and adults) with autism and other developmental disabilities with limited language skills.  So in honor of my son, Ryan, “We are Groot.”

I Have A Teenager…

Thirteen years ago today I gave birth to my first born.  This little boy has taught me the most indelible lessons one could learn.  He taught me about how patient, kind, and enduring love is.  He is one of the most honest, loving, human beings on this Earth.

The story of his birth is amazing.  I found out at around 7 months that I was pregnant with, but at one point in the pregnancy, his twin reabsorbed leaving an empty placenta.  I had severe pre-eclampsia, and nearly went into cardiac arrest during the c-section.  A few hours later, I got to meet him.

The first couple of years of his life was harrowing.  He tested positive for PKU, but it was a false positive.  He caught rota virus at 3 months old, and was hospitalized in Germany.  His daddy deployed to a war zone for five months (which was a blessing considering the Army unit we were stationed with was gone MUCH longer).  At 12 months, he had a severe reaction to the MMR vaccine and was hospitalized yet again.

After he had turned a year, his development slowed down considerably.  Eventually, at 26 months old, he was diagnosed with autism.  He is on moderate to severe end of the spectrum.  He is barely verbal, but often what he says and does is profound.  He has the capacity to change the people around him.  Most, who meet him, work with him, or educate him are never the same.

He has made me a much better person.  He is wonderful person, and I am privileged to be his mother.

Going Negative..

I know that the purpose of my blog is to spread positive vibes and feelings, and not dwell on the negative, but I wanted to address something that bugs me.  My biggest pet peeve ever.  It is the argument used by many people when talking about immunizations.  I don’t know how many times I have seen it, but one of the primary arguments used against parents, who are opposed to vaccinations is “Autism is not caused by vaccines, fear of autism is bad, and autism is not bad,” or “I would rather have an autistic child, than a child with measles…”

I see red when I read these statements.  I have autism, I agree that it’s not 100% bad, autism is part of who I am, but that doesn’t mean I like it.  This is what autism does for me– it makes me question my intelligence, it makes me feel stupid, it makes me feel inadequate, and it undermines me when I attempt to make friends.  It hinders my ability to concentrate, and often I find that people, who know about the fact I have autism use it to undermine me.  So while, yes, life is in general good, and I love living.  I don’t like living with autism.

It’s even more heartbreaking when I look at my son.  I love him, please don’t question that.  I don’t love autism.  I hate it passionately.  There is NOTHING good about his autism.  It has robbed him of his potential.  It often made him inaccessible.  It has made it hard for others to relate to our family.  It may not be always death sentence, but it is a life sentence.  Though I love him, my son will be someone’s burden for the rest of his life.  When I die, I will hand the burden to someone else– like his sister (how fair is that?).  He will probably grow up to be a man-child.  He won’t go to college.  He won’t get married.  He won’t have children.  He is not Max from Parenthood.  If I elect to do so, he will probably live in a group home with other men and women with limited mental capacity and hold menial jobs the rest of his life.  I don’t see how that is good or bad, compared to a disease that lasts 14 days with a 97% survival rate.

If it were between him having autism, and him having measles.  I would take the measles every day, and twice on Sunday.  Measles, though deadly in the past, is hardly deadly anymore.  Less than 3% of people who contract measles presently die.  Whereas, the death rate from autism and co-morbid conditions– 60%.  Yep that’s right– 60%.  That doesn’t even account for 75% of children with autism will be abused in some way, and 45% of those 75% will sexually abused.  Autism is a lifelong condition.  The 97% who survive measles have it for 14 days. If I went to Vegas, I would bet on Measles.

I realize that autism probably isn’t caused by vaccines.  I get that.  I’m not an idiot.  But pro-vaccine camp, please don’t belittle the everyday struggle that parents face with children on the spectrum.  While autism is not all bad, it’s not great, and it is a path that I wouldn’t wish on my worst enemy.  Every child with autism is different, just like typically developing children.  Some children are violent, some are pacifists.  Some children are highly intelligent, some children have low-IQs.  And yes, goods often outweigh the bad things, but when a parent, who has never walked the path, states that autism can’t be that bad as to avoid vaccinations. Autism is scary, autism is expensive, and autism is life altering.  If there were definitive proof (and my son didn’t react negatively to shots), that vaccines caused autism, you bet your ass I would not give immunizations to my children.

Further, as a mom of a child on the spectrum, I ask both sides one favor.  Don’t use my son’s condition as an argument for, or against vaccines.  It’s just that simple.  Pro-vaxers, it is not as simple as vaccines cause autism.  Most parents are not that stupid as to follow Jenny McCarthy down that rabbit hole.  There are MANY factors that go into making that kind of decision, and faced with ridicule, a constant barrage of negative shit, and even being told that I abused my son, it took TWO adverse reactions before I decided NOT to vaccinate him further.  As for my daughter, she was vaccinated on a delayed schedule, and only receives the bare minimum.  Watching one child in the hospital was enough to make me question the safety of vaccines.  Just about every person I know who is opposed to vaccines has had similar reactions.  Unfortunately, most doctors do not acknowledge those reactions.  They do not properly document the reactions.  It is damn near impossible, even with a medically documented case (I have TWO separate ER reports stating vaccine reaction) to get a medical exemption.  What no one tells you when you get one either, is that it also expires, and there is no guarantee if you have to switch doctors that the other doctor will follow it.  It just causes more animosity among parents. That said, I do believe that children with autism have the propensity to have vaccine reactions, but for the anti-vax camp, don’t use fear of a condition motivate your decision.  There are plenty of reasons to look at vaccinations with scrutiny.  Autism should not be the reason you avoid vaccinations.  It is hard to be strong when there is so much opposition, and so many people who treat doctors as gods.  Though the connection between autism and vaccines is unproven, there still needs to be more research as to why children with autism tend to have higher instances of reaction.

Touched By Murder

Yesterday, I found out that my son’s therapist was murdered.  This death has sent me reeling…  I have no words on this, other than why?

If you are able to, please donate to a site in his memory.

Don’t Poke The Sleeping Lioness…

I took my son to the doctor and had two very different and very frustrating encounters there.  The first was in the waiting room, and this is a message to those parents, who think that because their child is typical that any child who is not perfect needs to be quiet.  Teach your children that everyone is different.  Ryan has deemed the doctor’s office an appropriate place to let loose with every Tourette’s vocal tics known to man.  He says them loud and proud.  So we enter the doctor’s office, and I start filling out the paperwork, and he starts in on his tics.  A woman with three children walks in. I’m guessing they ranged in age from 12 months to 5 years.  The 5-year-old decided he didn’t like Ryan’s tics at all, and told his mom, “Can you make him shut up?”  So she smiles at her special little snowflake, and looks at me with eye brows raised expectantly.  OK, note to non-Tourette’s parents the more you try to shut up a kid with Tourette’s, the LOUDER they get.  I raised my eyes back at her, and shrugged my shoulders, and said, “I would if I could, but I can’t, so you and your kid are going to have to have to deal with him.”  She huffed and complained of a headache, and I thought to myself, the world stops because you have a head ache.  You poor deluded young woman.  Sorry sweetheart, I wish I could help.  Take a Tylenol, pull up your big girl panties and deal with it.  Now, lovely readers, please note, this is a pediatrics office, it is not a 5-star restaurant or a store or any place where children are not allowed or frowned upon.  If it were anyone of those locations, I would happily remove my son, and attempt to make him quiet, but there are some places where he needs to feel safe to tic.  He gets nervous at the doctor, nerves make him tic more, so I allow him to vocalize.

Part two of my frustration is with the medical system in general.  I go in with my medical form, and I ask for a new medical waiver for immunizations.  Let me start by saying this– under absolutely NO circumstances am I stating that I believe that autism is caused by immunizations, so don’t even go there.  I actually believe that autism causes immunological reactions to vaccines– there I said it.  My son had TWO severe reactions to vaccines (because I didn’t learn the first time).  His first reaction was brain swelling, encephalitis, which is the reason we suspect he has epilepsy among other lovely disorders.  The second reaction was an allergic reaction– he swelled, and not just at the injection site, but his entire body was covered in welts, he was so swollen he had difficulty breathing.  The doctor told me that I would have to get a philosophical waiver, as those reactions are considered NORMAL.  Yes, you read that correctly– encephalitis and body swelling with welts all over is a normal reaction to shots.  Oh and I can easily get a philosophical waiver when I go to the health department.  I just need to lie through my teeth about my religion and the fact that my daughter is fully immunized.  And what happens when we move again, because by God, we are military and we will move again.  Well, not their problem, I should just suck it up and get the shots, as brain swelling is a normal reaction to shots…

Some day, some one is going to poke this lioness a little bit too hard, and I’m going to go batshit cray cray on someone, but until then…