My idea for EVER-LASTING Justice for Ethan

i truly hope i dont offend any friends or other members in our community, I am just stating things from my perspective (admittedly limited perspective) out of curosity and confusion.

Why are we being petitioned for a call of action for a full investigation for Ethan Saylor? Wasn't it "fully investigated" already. This is an uphill battle that in my honest opinion has already been conducted as best as they will ever do.

I have a child who is defiant and aggressive. Though I do not know what other diagnoses Ethan has, I would like to point out to friends/ and to the public that Ethan's actions are not "typical" to Down syndrome. He could have multiple diagnoses that we are unaware of. They were, however, a common form of expressive outburst many of our children and adults in the disability community display.

If we would stop for just a second and think about things from the courts/ police/ and legal system--- we would need to (for a second) ignore that Ethan had a disability. If a young man of his size WITHOUT a disability acted that way in a movie theater or towards police/ law enforcement, the same actions most likely would have incurred, though the result would have been presumably different. THIS is why I feel that petitioning to have it investigated further will have No effect. They will continue to claim that the off duty officers acted according to their training. 


WHAT I THINK WE SHOULD BE DOING instead-

We MUST change the way our children, friends, neighbors, community members, and strangers with disabilities are treated. This is such a unique opportunity to shed light on the amount of ignorance that is out there. If our law enforcement don't know how to react, how will the general public? 

1)  We must be hosting events for our children/ neighbors to meet law enforcement

       *  Teaching our children how to react to police (index cards with critical information and instructions are a great assest for many children who are non-verbal or have limited intelligible speech)

       **MORE importantly teaching police how to react when confronting or questioning our children

 2) We must push for mandated training of ALL law enforcement personal in dealing with a wide array of disabilities, mental health, Oppositional Defiance Disorder, Intellectual disabilities, Physical disabilities. (see 3 & 4 for more)

3) We MUST train ALL aides, therapists, service providers, parents, caretakers, and employers HOW TO INTERVENE- How to advocate IMMEDIATELY on behalf of their client and maintain the situation while they explain to officers what their client's immediate needs are and what ramification can be taken if compliance or safety continue to be an issue. 

4) We must require all law enforcement personal to first try handling the situation through the individual's ESTABLISHED routine NOTED by the individual or their caretaker.


I feel that we need to stop looking at Ethan's death as an injustice because of excessive force. His death should be a driving force to fix the wrongs done to him- his death was an injustice because society has not learned how to fully accept disability. It is an injustice because of LACK OF TRAINING, LACK OF KNOWLEDGE, & LACK OF REAL SUPPORT that Ethan should have been provided.


This is something very dear to me because of Raven's secondary diagnosis of Oppositional Defiance Disorder. It is scary thinking about sending her out into the world without me. We are often stared out when Raven is being defiant. I am scolded for my lack of spanking my disobedient and occasional abusive child. To many Raven just appears to be a spoiled 5 year old who has a mother more interested in telling her to use her words or use nice hands than hauling off and spanking the naughty out of my child. - Raven's brain does not compute things the same as others. She gets an idea in her head, i.e. which way to walk or a specific toy she has to pick up, and when asked to deviate from that she uses screaming & hitting as her first line of defense to protect herself from change. Prompting and patients are really the only thing we can do to help her believe that walking a different way is just as fun and will not cause her stress or pain. --- Ethan had his way of approaching the day, had they prompted and been patient with him he may have eventually walked out himself. If he continued to refuse he could have been fined the fee of the movie and possibly a disorder conduct and all of his "crimes" would have had restitution. OR those surrounding him in his last few minutes on Earth could have just been understanding and helpful to the aide in getting him to where he needed to be.

I have a suspicion that had Ethan's mom arrived, had the police held off just a few more minutes or the aide convinced them to wait for Mrs. Saylor, Ethan may have very well been here today. We have a unique way of advocating for our children... we need to be using that right now to advocate for change. Please let us stop this from happening to another individual with Down syndrome/ or disability- Let us get ever-lasting justice for Ethan. 



UPDATE: I had the pleasure of speaking with one of our local officers today about Ethan Saylor and how it affects each of us in the disability community. I was sad to hear that he had heard nothing about Ethan's tragedy. However, I am pleased to report he took it to heart. I asked him how I could go about educating our local law enforcement and also educating our children and adults with disabilities about the precautions and how they are to communicate and behave around police (a holistic approach to preventing this tragedy from happening in our community). I was thinking about doing a meet and great with police, which he loved. He also informed me that I can schedule a tour at our police station. He ALSO recommended that I take an article about Ethan Saylor to our Chief of Police and express my concerns and fears regarding this matter. It was his opinion that things need to be done from law enforcements side to prevent this, but coming from him it would likely be dismissed. Coming from a parent and a member of this community- it has the potential to really cause some attention and Change!

I am also please to report that he states our officers are required to go through sensitivity and disability awareness training- however he feels it is inadequate to what I am suggesting. He, as am I, was so excited to have this happen in our community. I am so excited to work with him, and his co-workers!!! As soon as I drop Raven off at school tomorrow I will be stopping in to speak to the Chief!!!

I also contacted one of our local behavioral health providers to inform them of the conversation. As soon as I work through the details we will be sending flyers out to the families whom have children receiving wrap-around (Therapeutic/ behavioral) services!!!

Please share Ethan's story with your local/ state law enforcement agencies-- and see if they have meet and greets or tours as well!!! 

Work hard- Play hard (remember, kids do them at the same time)

I have been working so hard lately (and loving it) to create a workbook and portfolio of games for Raven. She is 5 and transitioning into kindergarden this fall. She attends head start, but we know from last year she does her best learning at home over the summer. Ideally I would like to create these so she can take them to school, or at the very least give me experience so I can collaborate with her teacher to make adapted activities that are pleasing and Helpful for Raven.

I started off laminating everything until Raven's TSS suggested using sheet protectors (you can purchase 10 for $1 at your local Dollar Tree!) Though they are not as thick (or strong) as the laminated sheets, they are much cheaper. Raven uses dry erase markers on each of these

Many of these were torn right out of preschool/kindergarden workbooks I purchased at the Dollar Tree. Others were downloaded from google search such as the connect the dots pages (I googles connect the dot 1-10) and the number worksheets were found on Pinterest *please stand-by, I am working to get my follow button to stop malfunctioning).

*Warning- these were all made to be printed from a borderless printer- adjust accordingly!

  *Add your child's name on the blank line- I used KG Primary Dots (Here). You could also use a pen/marker using dots or dashes for them to follow along.

Raven's second binder consists of prepositions/ descriptives for example "circle something sharp, green, in front of, or tall) *Raven's BSC made these so I haven't a clue where she got them from, sorry.

Raven also has an assortment of file folder games all found at Filefolderfun.com 

• Apple Size Sequencing
• Cupcake Counting
• Noun & Verb Sequencing
• Lady Bug Counting
• Ice Cream Cone Button Counting--- I velcro'd color coordinating buttons on what appeared to be white circle sprinkles rather than having Raven velcro a small number onto the cones).
• Pumpkin Alphabet Matching
• Seal Color Matching

And FlashCards-- My daughter absolutely LOVES her flashcards! (I did not include pics because she has over 500 stuffed in a box that she shuffles through everyday *often spilling off the couch and onto the floor beneath it- Thanks my love). She is working on or has mastered, yet still reviews out of joy: rhyming, colors, shapes, nouns, number identification, counting, upper and lower case alphabet, emotions, what questions, inside outside (which we walked around taking pictures inside and outside our house!), fruits and veggies, sight words, and familiar names.

Medical Necessity to sit your butt down and shut up

I apologize... it is late and I am in a yelling- "I'll use caps locks a lot to really get my point across" mood.

I have to say this since I don't have the opportunity to drive my butt to congress' door nor do i have the ability to stand outside picketing (I'm a mother you see). I'm not one to voice my opinion on Abortion-- I would never have one, I know few who have and I do not spite them. I personally think regulation and TRUE information about the pain they cause to the fetus and to the parents/family both physically and emotionally need to be explicit stated before Informed Consent could be reached, but those who don't want their baby would resort to more harmful practices  <----<-- my two cents worth

With that said.. bring on the rant: FOR THE LOVE OF GOD ---- SCREW THIS MEDICAL NECESSITY SHIT. CP/ Down syndrome/ Etc..... LIFE OR DEATH I get.... DISABILITY---- NO, NEVER should a society.. a government.. its people practice selection of birth to those whom are "Perfect"... nobody is perfect. Your kid could wreck, do drugs, kill people, be killed, die young, die old, hate you, bully others, etc etc.... IT IS LIFE.... I LOVE MY DAUGHTER WITH MY WHOLE HEART and it is high time policy makers didn't listen to stupid people whom have never been in our shoes.. or pussied out and wanted their "normal" pot smoking/ emo kid on their second try. THESE ARE CHILDREN... NOT DAMAGED GOODS... THERE IS NO RETURN COUNTER... ABORTION IS NOT A CHANCE TO TRY AGAIN. IT IS AND WILL ALWAYS BE THE DEATH OF AN INNOCENT CHILD. A painful, barbaric, inhumane euthanasia of a child with a beating heart ready to come into this world and trust that one (or two) people who sadly wish it gone.

DO NOT USE MY DAUGHTER AND OTHER CHILDREN WITH HER CHROMOSOME COUNT AS YOUR SCAPEGOAT TO WIN THIS "DEBATE".  I was never, not once, in my entire pregnancy at risk of losing my life. My daughter had the most common heart defect know to scientists and was patched up in under 4 hours, healed in less than 6 weeks. ------- My life is tough because I am a MOM, not because of what diagnosis my child has. If you have time for a "typical" child.. you have time to be the parent you were given the chance to be to a child with a disability. SOCIETY MUST CHANGE SO NEW/PROSPECTIVE PARENTS DO NOT FEAR DIFFERENCE>> THEY FEAR LOSS (plain and simple) Abortion=loss.

Rather than getting up on your soap box and preaching about how we must still have ways to kill babies with Down syndrome; TALK to US. We are here. We are your friends, your neighbor, friends of friends, what have you. We tend to travel in packs on Facebook, find one of us and you'll find a heck of a lot more. Ask us how "terrible" and "tragic" our lives are. Ask us if we regret Not aborting. Ask us if we would change our child in any way.

Our lives are blessed, wonderful, full, happy, and at times stressful (aren't all parent's though). We have no regrets about our bravery to face this world as proud parents, to stand up for our children when articles like US weekly come out. We wouldn't change our children for the world, but we WILL change the world for them. Our kids Rock!!! --- Before you continue to judge our lives, especially our children, please join us for a chat.... Our families are really much more alike than different than anyone else's. We are not super parents, or have some unnatural moral compass that enables us to take pity for our unborn child. We did not look past their diagnosis and say "I'm such a great person I can manage this extremely difficult life"-- God did not choose us because we are somehow more "right" for this child. We trusted in our hearts that if our child made it through the pregnancy that we too would look into the eyes of our newborn and fall instantly in love and in awe of their beauty.

***I will tell you though it is true-- receiving the diagnosis was one of the hardest days of my life, I was scared. Scared that she would not amount to anything, scared that I may not love her like a mom should, scared that society would be evil and cruel and Make her suffer------ These are all thoughts instilled upon me from interactions in our society, they were taught to me, I was conditioned to believe them..... BUT I fought them. I trusted in my self and my daughter more than I let stereotypes and myths guide me. Those negative feelings lasted for about an hour (for me)-- others can have fear for days, weeks, or months. Some families cannot bear to shake them (but that is okay, there are waiting lists of loving families willing to adopt those children when the biological parents just can't shake the negativity the world had filled their hearts with long before the child was conceived. This is why WE MUST CHANGE as a society. WE MUST ACCEPT EVERY MEMBER. We must STOP teaching the children in America to dislike others, to think less of others, to value plainness and average.

 WE MUST STOP striving for "Normal" --- Normal does not exist, it was created in 1850's by a French statistician Adolphe Quetelet using a theory developed by astronomers to plot stars. Seriously... society is that vain that we will listen to some French guy (Notice the name-- ADOLPHE *we all know how listening to Adolfs have "served us all so well") using a mathematical equation to plot stars to plot out "normal" characteristics in humans. L'homme Moyen (the average man) was calculated by plotting man's characteristics then averaging out the "errors" or deviations. The goal was to have the least amount of "errors" ----- never did this man consider that those "errors" make us who we are, they are actually what make us Perfect, they make us unique and special. We all have our flaws---- it is time everyone started counting their own flaws and stopped counting the flaws of those around them.






*Thank you to NDSC for their quote which I deviated only slightly from "We are more alike than different"
*Feel free to read more about Quetelet in (Porter 1986, 102) or in (Davis 2013, 2).