I’m in my classroom after lunch. My cell phone rings and I answer it. It is Emmett’s teacher.
“Hello, Jenipher. We are at Wells Fargo Arena. Emmett is having a meltdown and we haven’t been able to calm him down. We won’t be able to safely transport him back to school. Is someone available to come pick him up?”
Wells Fargo Arena is 40 minutes from Emmett’s school. It’s 25 minutes from the school where I teach. It’s 5 minutes from my in-laws house (my husband is out of town). I tell Emmett’s teacher I will call Nana and Papa and see if they can come get him. I get the exact location from Emmett’s teacher and immediately call my in-laws. They leave right away to go pick him up.
Emmett’s meltdowns aren’t something to be taken lightly -
he’s 6’6” tall and weighs just over 300 pounds. Imagine the worst physical tantrum you’ve ever seen a two year-old have...now multiply it by 280+ pounds. He can do a lot of damage, to people and property. Emmett rarely has a meltdown at home, but for some reason he had been having more and more at school over the past few months. I’ll touch on that later - back to the story:
I call Emmett’s teacher back to let her know that Chuck and Susan are on their way...but she says:
“Emmett was being unsafe and he has hurt several staff. We were worried he’d hurt himself or others because he was almost kicking the windows out of the van. We had to call the police. Emmett has been restrained and handcuffed. We are in an ambulance on the way to the hospital now.”
Oh no. No no no no no. Emmett? Restrained? Handcuffs? Hospital?
I can’t even accurately describe how I felt at that moment. Mortified. Terrified.
I was hearing what no autism parent ever wants to hear: police, handcuffs, restrained, ambulance, hospital. I pictured Emmett, crying, yelling for help - screaming, thrashing, kicking, spitting...his face red. The tears. I knew he had to be scared and confused...I was scared and confused. I knew what could happen:
“People with an autism spectrum disorder are seven times more likely to encounter police than "neurotypical" individuals, or those without developmental disabilities... Depending on the severity of their disorder, people on the autism spectrum can react inappropriately to police and have trouble following commands.”
While on the phone with Emmett’s teacher, I frantically asked to speak to the police officer. She handed him the phone. It turns out it he was a Polk County Sheriff. He told me that Emmett had resisted and spit at the sheriff, he’d also tried to kick him. The man was gruff, but respectful in the midst of my panic as I fired questions at him. But my worries weren’t assuaged one bit. No matter how much I respect law enforcement, I know Emmett’s size and weight are near impossible to restrain when he is having a full on meltdown...
and bad things could result from any struggle he has with law enforcement.
I immediately left school. Driving through hysterical tears...calling my in-laws, calling my mom...
not wanting to call Scot. Deciding not to call Scot until later because I didn’t want him to worry until I had more to tell him. I kept running different scenarios through my head, imagining what state I’d find Emmett in - would he be hurt, scraped, bruised - or worse? Would he still be worked up? IS HE OKAY? I worried about his eyeglasses for some reason, anticipating the trouble I’d have getting them replaced if they were broken.
At this point I wasn’t even wondering what had caused Emmett’s meltdown.
I arrived in the Emergency Room and was directed back to where I would find Emmett. In the room I found Emmett’s teacher, both of my in-laws, and a nurse - my mom arrived shortly thereafter. It was a tiny room...or maybe it only seemed tiny because Emmett is so large. Half of his legs were dangling off the end of the gurney and the rest of him was crumpled in a heap. The nurse was making sure Emmett was comfortable. Emmett’s teacher was standing quietly in a corner near the head of Emmett’s bed. Scot’s parents told me that Emmett was still pretty upset when they arrived, but that he calmed down a lot once he knew they were there (he loves his Nana and Papa!).
I was informed that they had gone ahead and sedated Emmett once they got him to the room. He’d still been restrained when he was brought in. His face was red and swollen from crying and exerting himself in the restraints. His wrists had a couple of scrapes and indents from the handcuffs. His glasses were unbroken...HE was unbroken.
I asked his teacher what had caused his meltdown. She couldn’t tell me exactly. She said that she had looked down from where she was sitting with students and noticed that he was reaching over seats and hitting other staff. So, I had no answers and I knew I wouldn’t be able to get any from Emmett. Emmett’s teacher left to return to school. At one point the school’s principal called, only to tell me that because of the incident, Emmett would be suspended for a week.
Over the next few hours, the nurse kept coming in and gently checked in on him - and us. She was everything you could dream of in the perfect nurse - we felt cared for by her as she was taking care of Emmett. Two doctors came in and checked on Emmett and talked to us. I was unsure of what was going to happen next. I was afraid that they were going to take Emmett from us and keep him for a psych hold. The doctors were nice and reassuring as well. They could see that Emmett was just a big young man who’d had a singularly difficult afternoon.
He slept for a couple hours, curled up on the ER bed. The gurney looked like a toddler bed with Emmett on it. When we were ready to be discharged, all he wanted to do was go to Pizza Ranch with my mom. When she brought him home she told me that he was falling asleep at the table as he was eating. Poor guy - between the meltdown and the sedative he was ravenous and exhausted. He came home and slept for 11 hours.
So What Happens Next?
Thursday, February 11th, 2016:
For two days, I hear nothing from Emmett’s school - nothing. No one attempted to contact our family to check on Emmett - not his teacher, not the principal, not the nurse - no one. He’d had a major public meltdown (and we still didn’t know why), he had been restrained and handcuffed by law enforcement, he’d been taken to the hospital and sedated while in THEIR custody, and not a single person involved in the incident was concerned enough to inquire as to how Emmett was doing.
So I sent an email that began: I thought I'd let you know that Emmett is fine. I thought it strange that no one from Grandwood contacted me yesterday to check on him - seeing that Tuesday was such a traumatic event. Should I be expecting an email of the documentation of the incident? Usually I receive an email the day after...I received nothing yesterday.
On Friday I finally received the staff report from Tuesday’s incident. All I could glean from it was that Emmett had been upset because there’d been no WiFi for his iPad at Wells Fargo Arena (a phone call to the arena informed me that there is, indeed, free WiFi at Wells Fargo), and that he had wanted food that staff was eating in front of him. I also found out that they were there - with thousands of other school-age children - for an Iowa Energy basketball game.
So, essentially, Tuesday had been a perfect storm of everything necessary for Emmett to experience an epic meltdown (hint: THEY SET HIM UP TO FAIL...almost as if they WANTED this to happen):
1. Basketball (which he cares nothing about) = boredom
2. Large arena + thousands of loud kids = sensory overload
3. No WiFi = no YouTube videos = no way to escape boredom & sensory overload
4. Eating food in front of Emmett when he is hungry = He is going to want some
I’m just going to give you the short version of what happened next:
There have been so many meetings since then - so many - at least half a dozen. More than that if you count the meetings that didn’t include family. Each meeting was 2 to 3 1/2 hours long and most were with staff from three different school districts (Emmett is open enrolled to another district and from there he had been enrolled to a third district to attend a special school).
The bottom line was that Emmett was not going to be allowed back at the school he had attended for almost four years. Their reason? He’d hurt too many staff.
I have a lot of truth to tell about how toxic the environment at that school is, and some huge criticisms I could make about how my son was treated there. I don’t doubt that staff cared for him - I know many did - but that was not enough. People were scared of him, of his size. We’d heard about his aggressive behavior, but it seemed alien to us - we did not see any of this behavior that they were describing at home.
I scoured through all of the behavior reports I’d received throughout the course of the year. Every time Emmett was put in the “Time Out” room (essentially a padded room with a safety lock), one of these reports was filled out and emailed/mailed to me. Pretty much every single one had antecedents (what they perceived to be the cause of his behavior) that weren’t actually antecedents, they were actually Emmett escalating his behavior in response to failure of staff to acknowledge his attempts at communication.
Emmett may not be able to communicate in a typical way, he is able to communicate his needs and wants effectively. It isn’t always verbal, because Emmett’s expressive language can be pretty limited, especially if he doesn’t have a script for it. A “script” is a previously learned and practiced phrase that Emmett can generalize and use to answer a question or ask for something. For example, if we are at a restaurant and he would like a refill on his drink, he will say to the waitress, “More Diet Pepsi, please.” - Emmett has learned that that phrase will get him what he wants: more Diet Pepsi. This sounds like common sense to all of us, but for a person with a significant communication disorder like Emmett - it has to be implicitly taught. Before being taught to say this phrase, Emmett would just say “Soda” and expect everyone around him to understand what he wanted.
A Little Lesson on Communication:
Picture This:
Imagine you are at a restaurant and you would like a drink refill. When the waitress goes past your table, you ask for a refill. A few minutes later, she passes by your table again - without a refill for your drink - and you ask her again. Still more minutes pass and you don’t have your refill, so when another waitress comes near your table, you ask her if she would please refill your drink. You wait patiently, however you are now getting pretty thirsty. You see your waitress a few tables away, and you stand up - with your empty glass in hand - and wave it at her, the ice clanging against the sides. You sit back down and wait, but you are getting a little impatient. Your eyes are darting around, catching the movement of every staff person in the restaurant - who is going to bring you the refreshment you have been waiting for? You have let the wait staff know repeatedly that you would like a drink refill, so what is the hold up? Why is this taking so long? Did they not understand you? Does this restaurant not give refills? Why not? Every other restaurant you have been to gives refills. Ahhh...there is your waitress, she’s headed toward your table with a tray of drinks...um, nope - she’s taking them to the table beside you. After serving your neighbors drinks, she walks back past your table. You stand up, glass in hand, and block her path. You ask - again - for a refill, this time your voice is cracking just a bit because you have really started to get frustrated. She says nothing, but takes your glass with her. Several more minutes pass; you sit there, still frustrated, still thirsty, and wondering what you should do next to get your refill. At this point, the host comes and seats a new table of guests near you. You grab his attention to tell him what is going on and how you would like a refill for your drink. At this point you are very upset and waving your arms around a bit. You really are making quite a scene at this point, all over a glass of pop. You demand your refill - IMMEDIATELY. RIGHT. THIS. MINUTE. He then looks you straight in the eyes and tells you - in not a very kind tone - that if you continue to make a scene he will have to ask you to leave the restaurant. That’s it. You see no other option: with a howl of frustration, you flip your table over - sending everything crashing to the floor. You turn to the host and push him out of the way - which sends him toppling over another table full of guests. You storm out of the restaurant.
What just happened in this scenario was that you used your communication skills to let your need/want known to the wait staff. Through almost all of the situation you communicated appropriately, both verbally and non-verbally. You did this, and yet your attempts at communication were not acknowledged until you were already frustrated and feeling upset. You escalated your behavior as your previous attempts to communicate were not honored.
Imagine how this situation that just happened in the restaurant would make you feel. Now, imagine a similar situation happening to you almost every day, one where you were making requests while using communication and it was being ignored - consistently. Would you try harder to communicate?
This is one of the main things that causes Emmett to have extreme behaviors. When he acts out and gets aggressive, it isn’t because he is mad or angry - it is because he is trying to communicate MORE, after all of his other attempts at communication have been unsuccessful.
If he is not using appropriately phrased requests and he is using single word or non-verbal commands, it is incumbent upon whoever is working with him (and supposed to be teaching him) to TEACH HIM FUNCTIONAL COMMUNICATION. If he says “bathroom”, you know he needs to go use the restroom - so take a few seconds and teach him the appropriate thing to say: “May I please go use the restroom?” - then have him say it. Then, let him go use the restroom. This is pretty common sense - yet apparently it isn’t - even for some professionals.
One of the reasons why we do not have extreme behaviors from Emmett at home is because we have always honored his attempts at communication, and we do our best to teach him functional communication. If it is a reasonable request, then he usually gets what he wants. Not right away, though - we make him wait. If he asks for a Pepsi, I will tell him a time that he can have one. For example, if he asks for one at 11am, I tell him he can have one at 12:30pm. He is fine with that, he waits. He may ask for an iTunes card (which he does several times a week); I tell him he can get one on the first of the month. If he wants to go somewhere and I’m not feeling up to it, I tell him. I can tell him we can go somewhere tomorrow, or that maybe Nana can take him somewhere later. He may not like it, but he knows what I am saying. What we DON’T do is ignore him. If we were to not respond to his communications, he would amp up his communication - which is not a good thing. He might get louder, or the tone in his voice will become agitated. He’d eventually start hitting walls or furniture. He might even (and this happens VERY rarely) smack my arm, or kick at one of his brothers. He is only trying to communicate more. He isn’t acting badly, he isn’t mad - he is COMMUNICATING.
Back to the Story...
I am going to skip all of the negative stuff. I don’t want to revisit that stuff - it is horrible and unbelievably heartbreaking. We sent our son to a special school for kids with significant disabilities and we expected that they would do right by him - but what happened is far from that. I’ll just say that Emmett is no longer a student at that school and we are VERY glad. I’m sure they are pretty happy about it too...but not more than we are - take my word for it.
Moving forward. We were now left with the AEA and two school districts: our resident district and the district Emmett is open enrolled to. Suffice it to say both districts were HORRIFIED with the situation at Emmett’s school. We all knew Emmett needed help - some intensive behavioral instruction - and a new place to go to school, only we weren’t sure what his program should look like and where it should be - and WHO would work with him.
Meetings, meetings, meetings, meetings. Lots of meetings. More meetings. It was fantastic to see everyone working together to get things right for Emmett. Slowly, Scot and I began to feel more hope. Emmett was almost 19, and he only has two years left of school before he graduates. As he is now, he is not prepared for any vocational work. He is not even prepared to enter an assisted living placement. He still can’t consistently look for traffic before he crosses the street. He has a limited understanding of how money works - he will often give the cashier money then walk away without getting change. He still doesn’t know how to use a phone (though he does know how to FaceTime). Emmett has A LOT to learn...and I can’t say that we have seen much growth out of him over the past few years.
I am also going to skip through some more (unnecessary) details and get to where we are now: after two months and two days, Emmett is back in school. His new program is VERY different. He now has a 1:1 teacher and two 1:1 associates. He is in his own classroom that has been designed and put together specifically for him and his needs. His teacher is someone we trust - who knows all of the functions of Emmett’s behavior. He’s worked closely with the doctors whom Emmett has seen in Iowa City since he was two years old...who initially TAUGHT US how to communicate with Emmett when he was just a little guy. The associates that have been hired are top-notch and have already endeared themselves to Emmett. Emmett is in a good place, thanks to the school districts working together and putting together this program for him. Emmett is HAPPY, Emmett is SAFE, and Emmett is finally getting the instruction and education he deserves and is entitled to. He loves school again. HE HAS HAD NO NEGATIVE BEHAVIORS. We hope that by the time school starts again in August he will be able to join a small autism classroom in a school with his teacher and associates by his side.
So, this is what our family has gone through these past two months...a parent’s worst nightmare has turned into a fantastic situation for our son. We had so much help and support throughout it all. Scot and I would especially like to thank the following people:
Terri: my mother, who has been with us for every meeting - even the ones Scot or I could not attend. She is a retired special education teacher and has been an incredible resource. My mom was invaluable when it came to helping us advocate for Emmett. She also helped with Emmett during the extended time that he wasn’t in school - taking him to lunch, to the library, to the store, and keeping him busy. She also spent time with Emmett at school when he returned to his new classroom, making sure the transition went smoothly.
Susan: Scot’s mom, who also helped with Emmett during his time off from school. Emmett loves his Nana more that anything and looks forward to spending time with her.
Ethan: Emmett’s older brother, who helps us take care of Emmett. Ethan would make sure Emmett got breakfast in the morning, helping Emmett with showering and grooming. He also helped Emmett do laundry and kept him company when Scot and I were not at home. Ethan has an amazing relationship with Emmett and has always been an attentive, understanding, and supportive big brother.
Emily: Emmett’s Case Manager at Easter Seals. She is the best case manager a family with a special needs child could ever hope for. She attended meetings and kept a line of communication open with us the whole time.
My coworkers who listened to me and let me vent and offered me sound advice...thank you Amy, Carol, and Laura.
The administrators and staff from the AEA and both school districts who really worked together to create a program for Emmett that will help him.
Please visit our Spreatshirt page, AutismLove, to see shirts with Emmett's drawings and other great designs!
Now, for some pictures of our sweet fella:
