It’s been five months since my post. Five months. Long enough in real time. Light years in CJ time. We are a million light years from graduation, and nobody gave me a map from there to here. CJ graduated from high school in May. Seven years of high school and at the age of 21, CJ graduated. I have never been so terrified in my life. He walked out on the commencement stage to the call of “Christopher Williams.” Who? You could have heard a pin drop. Nobody knew who that was. Then the crowd saw CJ step out on the stage, and it was pandemonium. They clapped. They cheered. They jumped to their feet. “CJ! CJ! CJ!” He walked across the platform as a celebrity. He hugged everybody and everybody hugged him. He reveled in it.
And then we came home. I could feel the void looming. The emptiness of the days coming.
We shoved it back for bit while CJ went off to summer “college” at the ARC Jacksonville LIFE program. For 8 wonderful weeks, we all pretended that life was going on as usual. CJ loved his time there, growing, living in student apartments, and living the college life without classes.
And then it was over. Life as we’d known it for 22 years was over. And there was nothing waiting, no people, no activities, no bus, no purpose, no place in the world for CJ, except to sit in front of the TV and stare the next sixty years in the face.
School started again in August, and CJ didn’t go. Instead, he and I stayed at home with our new normal. Me being me, I like a good schedule. Sitting at home isn’t an option. So, CJ found himself out and about with his mom doing the shopping , going to the gym, and lunch with mom’s friends. Worst of all has been going to work with Mom. None of these things should ever happen to a 22 year old, but this was turning out to be CJ’s life.
Our options are limited. He can’t stay alone. He can’t live alone. He could go to a day program where he’d sit for hours doing arts and crafts. He could sit home and watch TV all day.
Not good enough. Not for me. Not for him. His world had shrunk to a shadow of what it was before. And the only one who could put it back together again was me.
He needed to get a job, I decided. How, I had no idea, but he needs a busy world full of typical people. Anything less is a waste.
Challenge #1: Money. Not too little. Too much. If CJ makes more than $85 per month, his SSI benefits are reduced fifty cents on the dollar. Yes. I need to find a job that makes almost no money. Because, if he has more than $2000 in his bank account, he loses his benefits entirely. Good luck, me!
Challenge #2: Working with a job agency. I discovered the Vocational Rehabilitation government program which helps people with disabilities prepare for job searches and find jobs. We were passed off to an independent contractor, who only gets paid if CJ finds a job. Great. So, CJ now has to learn how to present himself for a job interview.
He takes it very seriously. He has a “uniform” that consists of black pants and socks, black shoes and a green polo shirt. It doesn’t matter if the job interview is at 2 pm, CJ is up at 6 AM, dressed and ready to go. It all makes me want to cry.
He tries so hard, going to training sessions, watching videos on how to act and answer questions. I know it must seem so strange and bewildering to him, but he never stops trying to make the grade. Meanwhile, I make phone calls, send emails, go to meeting and arrange more interviews.
Could he stock shelves at the food pantry? Take in donations? Do laundry at the hospital? Volunteer at the high school? Anything. I’d take anything to keep him out of arts and crafts for the next forty years.
What’s better than one CJ? Two CJs!! Even better is when one of them is a computer image and can be controlled and even turned off when he becomes too irritating.
Ever wish you could just use a remote to turn your kid down, pause them or even turn them off? Well, now we can with CJ or Martin. Sadly, it is only the computer version.
TeachLivE has been working with avatars trying to cover as diverse a population as possible. They make them look different, act different and respond different. The idea is to give prospective teachers as broad an experience as they can. Because they haven’t tortured these poor future teachers enough they decided to throw a little autism their way. Nothing like some special needs to spice up a classroom.
More and more special needs students are being mainstreamed or included in regular
classrooms. Teachers are expected to work with students who have a range of special needs requiring a range of accommodations. TeachLivE now can include Martin in the classroom with the other students. Martin can act as neurotypical as they decide or he can exhibit behaviors common with autism. He can hit himself. He is the first avatar able to get up out of his seat and walk to the back of the room. He can jump up and down and flap his hands, behaviors that look so much like CJ, it sends chills up my spine. His smile is dead on. He wears khaki shorts and a green t-shirt. His shoes even have the elastic laces that changed our lives. http://autismmovesout.org/autism-tying-shoes-tangled-up-in-knots/
The first time I saw Martin and the behaviors he could exhibit, I cried. This really is something that can change lives.
2nd Annual TeachLivE Conference
The 2nd Annual TeachLivE conference was coming up. I was invited. It was after school got out. My husband was off, so we all went. They want to know if CJ will introduce Martin. Well….maybe….we can try.
We decide that I will go up with him and he can at least just stand there.
CJ Meets Martin
I’m getting ready that morning and I get a text. How would I feel about talking? Talking? Normally, I love to talk. When? Today. Today? How long? 2 minutes. A room full of PhD’s and I am supposed to talk about our experience with TeachLivE. OK. I can do that. I have an hour to prepare after all.
Apparently, there has been an issue of ethics brought up.
When you are doing research that involves people, especially people with special needs, there is a concern that they are not being exploited. Oh. This whole time I thought we were using them. I didn’t realize anyone would have an issue with us benefiting to this degree for nothing. I think it through. I guess people would be being “exploited”. dictionary.com defines “Exploited as “to use selfishly for one’s own ends” and “to advance or further through exploitation; promote:”. I could only think that we were “exploiting” them WAY more than they were “exploiting” us.
At the conference, they explain who CJ is and the avatar. I go up and CJ stays in the back holding up the wall. He is “fine”.
I start talking about our experience. I talk about how I have seen my child change. I tell the story of him asking Maria on a date. I tell about him asking all the girls at school on dates. I tell about having TeachLivE in our house. I tell about how he was having conversations. He was the one initiating them. I tell about how he wants to go to UCF at least once a week. I tell how UCF “needs” him. I tell about how people have come up to me over and over asking what is going on with him. Why has he changed so much? What are we doing? Other special needs parents want to know what it is and how they can get it.
I talk about the ethical issue that I was recently made aware of. I explain how I was so confused. I explain that there is no way to explain to anyone how desperate parents are. There is no way to explain the lengths that parents will and have gone to to help their kids. What if one more thing, one more service, one more therapy could make that difference? What if something, anything could improve your child’s future? What if one teacher is changed? What if one kid is more accepted? What if one more kid is included? This won’t just change CJ’s world, they could change the world. Dead silence. I’ve gone over. WAY over. 9 minutes 20 seconds according to my daughter’s video. I’ve taken it too far. Me and my big mouth. No one stopped me. The genius educator and engineer are sitting in the front row. Why on earth didn’t they cut me off? People begin to applaud. I think they liked it.
They take the microphone to the back where CJ is still holding up the wall. He answers a few questions and then escapes.
People continued to come up to me afterwards and thank me for sharing. Several told me they wished their administrators could have heard me as it is difficult to explain why they want to use TeachLivE.
Relief! I wasn’t a complete flop!!
CJ with Geniuses Dr. Hynes & Dr. Hughes (Missing Dr. Dieker)
What’s next? I am not sure if we will do more from home or when CJ will get to officially be with the avatars.
They are in the development phase for a younger, kindergarten version of Martin. I have been digging up old photos and videos again. We have been asked to consult again.
A while ago I wrote about how UCF has an amazing program called TeachLivE.It is a computer generated classroom complete with avatar students to help train teachers without putting any human students at risk.This incredible invention took a strange and amazing turn when a group of autistic students went for a visit.http://autismmovesout.org/autism-teachlive-is-for-lovers/CJ was lucky enough to be one of the students.After our incredible experience, I thought that was the end of our story. It wasn’t.TeachLivE was about to come home.At least to MY HOME!
I am contacted by the TeachLivE people.How would I feel about putting TeachLivE in my house?Seriously?Is it possible?How soon can you do it? What do I need to do?How much will this cost? Does my insurance cover it?
Turns out it is free…..but…there are lots of logistics.I mean LOTS!There is paperwork, funding and details of who is doing what, when and where.We are going to part of a study or multiple studies.I still not sure how many people or how many studies are involved even now.They want to get some idea of how TeachLivE can impact people with special needs.What changes can they make?How much can it help?Is it all positive or just too much?OH….The Pressure!!!!
It is about to begin.A wonderful young PhD student comes out to set everything up and show me what to do.OK.Ready for the truck.How big is it?Do we need movers?My house is really not very big.Do you need my TV or are you bringing your own screen?I know computers are much smaller now. No mainframes.No rooms full of equipment, but this is serious stuff.She comes in with a small computer bag.It is a laptop.A laptop?I am impressed and a little disappointed. I was actually worried about where on earth I would put it and keep it safe.
So, we turn it on and the avatars pop up.IN MY HOUSE!It was a surreal experience.I was a little overwhelmed.We have entered a whole new world. I’m sure that Star Trek is somehow involved.Maybe it is Star Wars with holograms.Anyway, it is amazing.It all took my breath away a little.They will be taping everything.I make them promise not to tape me!I realize that as I am talking to the avatars, I start to feel self conscious about my appearance.I’m not wearing much makeup.I haven’t really done my hair.What about my outfit?Talk about suspension of reality.I am actually worrying about what the avatars think about me.I move everything so that they can’t see the pile of stuff I have stashed in the same room thinking no one will see it.I didn’t count on the avatars coming in.I feel the need to shut down the computer before changing or doing anything private.
I tell CJ that the avatars are coming.I’m not sure how to explain it or how much detail to go into.CJ loves the avatars, but how will he feel about them being in his home.Will he like it?Will he respond the same way?Better?Worse? Is he going to think that all his invitations to “come over to his house”, “play basketball” or even go out on a date, have finally been accepted.My palms are sweating.I was on edge.This HAS to go well.What happens if it doesn’t?Will they just stop if he doesn’t cooperate? My performance anxiety greater than almost any I have ever experienced.It’s time.I log on.They are there.I go to get CJ.CJ refuses to go in.He refuses to cooperate.Great.Now that everyone has gone to all this trouble and expense, he is not going to participate.The great battle ensues and ends with him slamming the door in my face, yelling not so nice things at me.He sits down at the computer, puts on the headphones and says, “Hi guys”. He then proceeds to have a conversation with the avatars and enjoys himself.
The TeachLivE folks inform me that he is already research gold.Me…..???Gold?You call THAT gold?You should hang out around here more often when he is refusing to do things.We could all get rich.They actually want to see what he likes, dislikes and how much he is willing to cooperate…or not.I am not to force anything.We work out a system where he can “earn” something.He gets to pick a “treat”, usually involving food if he cooperates. I now stock up on all possible rewards.I NEED this to go well.(after all, isn’t it really about me?)
Continues….Now, with food on the line, he’s motivated. He starts to get more excited on the days he is going to talk to them.He starts deciding ahead of time what he may want to tell them.He starts engaging with each and every avatar before leaving the room.What???He is usually trying to avoid conversations.He is usually trying to engage with as few people as possible.He will usually stick to one or two VERY safe people. Now he is the one engaging with them. He starts to ask questions.He remembers information from prior conversations and follows up with the specific avatar.
He asks “Where are you going next year? Are you going to college?”He asks about the one avatar’s grandmother that they had discussed in a prior conversation.WHAT??!!?? CJ has always had the memory of an elephant, but only to harass you about something you forgot or your worst parenting moment.He has never been one to ask about what is going on with you.He has never been one to ask about your day, your weekend, your plans.His new thing now is to ask everyone he sees, “How was your weekend?”.The best part of this is that it can be any day of the week.It is appropriate so people don’t react negatively and generally answer.It is funny if it happens on the wrong day of the week, like a Friday.He usually gets a slightly strange look, but he almost aways gets an answer.
All the sessions are being recorded, because the researchers can’t even begin to count or study all the things that are happening.There are now 8-10 PhD candidates working with CJ for portions of their dissertations.
I am thrilled. They are thrilled. Best of all, CJ is so happy.I can’t believe all of this and the changes it is making in my son.
More to come….Good thing UCF and TeachLivE have CJ.Not sure they would be able to go forward without him.One thing I know is that we don’t want them to!They might think this is research gold, but for us and, especially for CJ, it’s priceless.
What do they call it in the movies? Suspension of reality? Suspension of belief? When you forget that it is not real and you are sucked into a story and you believe if only for a short time that it is real?
We have officially entered an Alternate Reality. CJ is the local expert in his field. He is the one you call if you have a project, if you need to test an app or program, or just need to interview someone. We have had several graduate students come out and interview him. Not me. Him. We have TeachLivE using him for their development and him using them to improve his dating skills. We even have the local genius testing her new app on him.
A few months ago I got an email from a young woman working on a science fair project. She had been working with a PhD at UCF to develop some technology to use with persons with Autism to improve social skills. CJ had come up at TeachLivE and she had heard about him asking the avatar on a date. She wanted to know if it was OK to mention CJ in some upcoming interviews.
Me….sure mention away. It’s all on line. And in my blog. (I am sure she anxiously awaits the next entry.) 😉
I get another email from her asking to talk to me to ask some questions.
I talk to a delightful, poised, very intelligent young woman. She explains that she had met with a Ph.D. at UCF, Darin Hughes. She had worked with him on a game he was developing to improve social skills in persons with Autism. She was interested in getting CJ to try it. She wanted to have local TV video him playing the game for an interview. Absolutely. She does not go to CJ’s school. The school she goes to does have an ESE program and we know several of the students. I almost asked her why she didn’t just use someone at her school, but didn’t want to pass this up. She was obviously interested in his connection to TeachLivE.
So, she explains to me that the game had to be played on a computer. She rewrote the code in Java script so that it can run on iPads and iPhones. Me. ?? You what? Of course you did. That’s what I would do.
I knew she was smart, but seriously. We talk for a few minutes. I ask where she is going to school next year. I’m thinking Harvard, Yale, MIT…possibly UCF to continue her work with the technology. I’m sure Sheldon is there somewhere. Definitely Wolowitz for sure. She could be Penny, after all. (just much, much smarter)
She says….wait for it….she’s going to be at her high school again next year…she’s a …..FRESHMAN!! Me……………………………………………………………………………..
I’m not speechless often. I am this time. Soooo……….You really ARE the local genius.
So…now the UCF geniuses have a high school genius on their side.
So….the Local Genius contacts me a few weeks ago. She is doing the interview out at UCF with a UCF station and she wants CJ to come and see the app and see if he can play it. She wants to video him and possibly talk to him.
So…we troop out there over spring break. We meet a delightful, tiny, very poised genius. CJ always wants me to leave. I warn them and leave him in the room with the genius, her brother, who DOES go to Harvard and the reporters. Elizabeth and I go off in search of Wolowitz and Sheldon. I am SURE they are here. I wish I had taken photos of the labs around us.
Elizabeth and I end up talking to the professor who teaches the STEM class the local genius is doing her research through. I decide that Elizabeth and I are slackers. I also decide that I would have like science WAY more if I had known about all this.
CJ loved the app and learned it right away. The local genius shows it to me. It is brilliant. I can see so many opportunities here. I have said from the first time I saw TeachLivE work with CJ that there has to be someway to make an app. If I could just recode into Java script…..I say as we fade to a dream sequence.
They come out and the reporter asks if CJ or I would be interviewed. I told her CJ probably won’t but she can ask. Would I? Seriously? Try to shut me up. I look down…..well….at least I’m wearing a clean t-shirt today.
I go to answer a couple of questions. They wire me up. They start with a question about TeachLivE and CJ. I stop them right there. I explain that I will start talking, but they will have to edit it as it is not an easy answer. I talk for WAY too long. They ask a few other questions. I have thought about all of this A LOT!
What are the possibilities here? What if there was an affordable app that people anywhere could download to use wherever, whenever they wanted? What if this helped even a little? What if therapists and teachers could use it?
There is no way to explain to people the level of desperation families feel when they get a diagnosis. There is no way to explain the feeling of inadequacy you feel when you keep thinking what if I did one more therapy? What if I did a different therapy? What if I did one thing different and that made the difference? There are stories out there about how a family dropped everything and enlisted leagues of volunteers and armies of therapist and “cured” their child of autism. What if I could have done that? What if you could do that? What would it take? I know people who went as far as having invasive procedures done. People are desperate.
What if an app could help? What if an app could make a difference?
We leave and other than my disappointment in not meeting Sheldon , I am thrilled. I hope to continue with the genius. She’s adorable and brilliant. CJ liked her, too. You can tell, because he couldn’t look at her.
I get an email that the interview aired. I have permission from the genius’ father to post it. I even have permission to use her name. Her name is Sapna….personally, I like the Local Genius, though. By the way….I talk WAY TOO long! (as usual)
Picture yourself, a humble, sincere, vaguely panic stricken education student just about to step in front of a class room full of middle school students for the very first time. You have the best that a college education can give you and a handful of memories of your own school experiences (which probably doesn’t help) and an evaluator watching in the wings.
Extra strength antiperspirant, anyone?
Now imagine yourself seated in in that same class room, surrounded by young people your own age. They’re laughing and talking and coughing and moving in their seats, tapping toes and rummaging through backpacks while cell phones ring and the air conditioner hums and clatters in the background as the fluorescent lights overhead put out a high pitched buzz. The sound of heels clicks on the floor outside the door as people walk by, chattering. Someone is writing with a squeaky erase marker on the dry board on the wall while the person closest to you slurps from the bottom of their foam cup through a straw. A chair scrapes across the floor as someone stands up and the chains on his jacket jingle when he does. Behind you, someone pulls open a crackly snack bag and the smell of Doritos rises into the air. Every scent and sound is equally strong. Each one demands your attention. Nothing gets filtered out.
Then someone jostles you, squeezing by and calls your name. You look up at their face. It fractures slightly into a thousand pieces, each shifting slightly differently as the mouth and eyes and jaw bone move. The confusion is overwhelming. You can barely process what they’re actually saying, looking at that bizarre spectacle. You look away instantly, anywhere else but at that face, but the painful sensation of that glance stays with you, and you start to rock back and forth to help push the feeling away. It doesn’t help much.
And now, it’s time to be social and learn!
An Educator and an Engineer walk into a bar….
Stop laughing. It could happen.
In fact, at the University of Central Florida, it did.
UCF Engineering Smart Guy: Why not give these brand new teachers a chance to get up in front of some computer generated students first? You know, test it out with software students…control the environment.
UCF Educator Brilliant Person: Uh. If we’re controlling the environment for them, how does that train them to control the classroom themselves? Where’s the random? Where’s the real life?
UCF Engineering Smart Guy (beginning to sweat with excitement): So, it needs to be real! And digital! Really really digitally real!
UCF Educator Brilliant Person: Uh…have you seen “Avatar?”
Speakerphone: “Hello? This is Bill and Melinda Gates. We felt the earth move here in Redmond, WA, and we have a grant for you.”
And thus was born “TeachLivE, at least in my fevered imagination. A research team at UCF has created a virtual classroom peopled by avatars. (An avatar is a computer version of a real person. The viewer sees the computer version on a screen while the real person controls the avatar behind the scene. And no, they’re not blue.)
So now, before throwing a tender young teacher to the wolves who are our darling middle school offspring, the teacher can enter a sort of educational flight simulator full of desks and digital students, just as if standing at the head of a classroom. Every one of those avatar students is “alive” in that a real person’s body motions and speech are being reflected in real time on the screen. Each avatar has a name, personality and a back story. And they react based on the teacher’s actions.
Of course, the avatar isn’t really a student. It’s controlled by a trained interactor, and it’s a highly controlled environment: a student teacher’s lesson plan has to be submitted in advance. This results in intense immersion experiences for the teachers. In fact, it’s so intense, no student teacher is allowed to be in the virtual classroom for more than 10 minutes. I’m not entirely clear on what happens if they go over 10 minutes but it may account for the slight burnt smell I noticed hanging over the lab.
TeachLivE is now being used all over the country to train new and experienced teachers. Go to Youtube. You’ll see.
A Teacher and a Teen with Autism walk into a virtual classroom….
CJ’s teacher has been hard at work on her master’s degree at UCF. This means she’s smart, and she knows people. She and one of the TeachLivE creators (Educators and Engineers again, though I don’t know if it was in a bar) got the idea to bring her special needs class into the virtual classroom…you know…just to see how they would react to the avatars. Some of her kids are more social and attend mainstream classes. Some fall in the middle. And one was completely non-verbal. But no matter where on the line, all her students struggle to engage or show social interest. So we already know how they react to people.
Except that these “people” aren’t really people. And these kids aren’t just any kids. The Engineer and the Educator wondered what would happen.
The result was a show stopper. Each student entered and one by one took a glance at the screen, stopped, focused and LOOKED. Heads up, shoulders back, eyes front, gaze steady. And one by one, the educators in the room came to a halt, spellbound. The room fell silent. Except for the kids…who started talking.
Every single one of the kids engaged unprompted with the avatars. They took turns. They initiated. They asked questions. They waited for answers. And then they answered back. It may not have been linear conversation as you and I know it, but it was a sustained back and forth that made rough sense, and most of all, the kids were interested in the interaction.
The non-verbal student typed on his iPad that he wanted to talk to one of the avatars, and he asked for the specific avatar by name. He had only seen that name on a seating chart on the screen because no one had spoken to that avatar yet, but he was interested enough to pick him out and ask for him. And CJ made sustained eye contact and engaged in continued conversation with the avatars for over 8 minutes. EIGHT MINUTES. Fifteen years of therapy had gotten us to a bearable sixty seconds. Ten minutes in this virtual world and we were light years away from anywhere we’d ever been before.
He didn’t want to leave. Nobody did. But they had suddenly found themselves in the middle of a completely unanticipated new experiment, and then someone managed to remember the 10 minute rule. By the time the kids were escorted out, everyone who worked in the lab was elated and in tears. And dumbfounded.
No one expected this.
A moment of sustained eye contact may not seem remarkable to most, but to the parent of a child with autism, it’s one of several Holy Grails. Having a conversation of more than two or three sentences that isn’t essentially forced upon your child out of necessity is something many of us gave up hoping for or expecting a decade ago. And your child suddenly finding the human race anything more than a mine field to be picked through….
Needless to say, it’s been a game changer.
First of all…why? Why is it different for these kids interacting with digital people instead of flesh and blood? What is there about the avatars that eases the fractured process of looking people in the eye? Are there subtle social cues or facial movements that are missing from the avatars that make it easier for a person with autism to process their visual information?
Now….what to do with it? There are a thousand questions now that weren’t there before. An entirely new path of research has suddenly opened.
CJ’s teacher is now a Ph.D. candidate at UCF and she works in the lab. The combination of TeachLive and Autism applied is now the focus of her dissertation. She is using CJ as a subject. He has been in the lab 3 times now, and he’s even talked to the avatars over the internet using FaceTime. He loves these sessions. He loves the avatars. He does not want to leave. He gets jealous when he realizes someone else is talking to them and he is not in there.
CJ talks with Maria in the TeachLivE lab
He is developing relationships with the avatars that are sustained from session to session. He even has a favorite. Maria. Ah, Maria. Maria is quiet. She is very smart, but she doesn’t offer answers. She never volunteers for anything. Interestingly, most student teachers never speak to Maria when they run the classroom. She’s the typical quiet student that would get overlooked in a busy classroom. CJ specifically asks to speak to her.
In his last session, he offered Maria information, he asked her questions, and talked about previous conversations.
And then he asked her out on a date.
Why is this happening? We have no idea yet. Personally, I can only think that it is safer. It has always been obvious that there is so much more going on in his head than he can get out. For some reason, when he’s with the avatars, he feels either safe enough or physically comfortable enough to try out some interactions.
Temple Grandin said that a person with autism finds it actually painful to look at someone’s face. The only thing that I can think is that the clues I get while engaging with someone…clues about their inference and emotions…are just too over whelming for someone with autism. Everything comes at him at once, and he can’t filter out what’s important and what’s not. I sometimes try to just imagine what that does to CJ.
That doesn’t appear to be happening in the TeachLive classroom.
Brave New World
And now…now things seem to be changing outside the lab as well. CJ is having more and more unprompted conversations. Real conversations with people. A couple of people have come up to me recently to tell me about an almost normal conversation that they had with him. These are people who know him and know what the difference is and know something’s different. They want to know what is going on.
I have no idea what to tell them.
After his last trip to TeachLivE, CJ invited a typical student (a girl!) to dinner at our house. Can I say that again?
CJ…invited…a girl…to dinner at our house.
It gets better. He was so insistent that she come that she and her family finally told me about it. I confirmed the invitation. And she came! He was so excited before she arrived, and he even sat at the table and (sort, of) engaged in conversation with her.
The only bad part of this is that now he wants to call her…ALL THE TIME! (I do NOT let him do that! You’re welcome!) Just pointing out that this is a problem I never, ever thought I’d have.
His 11 year old sister had some friends over on the last day of school. CJ called one of the boys over to the door of his room (no one is actually allowed IN his room, so standing in the doorway means it’s serious). He then proceeded to quiz the kid about his intentions toward his sister. HE was the one drawing an stymied 11 year old into conversation.
CJ: So. How’s school going? How’s school?
CJ: So, she’s funny. She’s really funny. My sister? She’s cute?
By this point, I am standing in the hall, texting CJ’s teacher like a mad woman, trying and failing to get video of the moment.
CJ: So. How was your birthday? Did you have a good birthday?
Boy (whose birthday was months ago): Uh…okay…
CJ: So she’s funny? She’s funny? You think she’s funny? My sister, she’s cute?
Wretched Boy: Uh, yeah.
CJ: Ah HAH!
This is a first. As Elizabeth comes and releases her poor friend from this doorway insanity, I am shaking. I have never seen CJ actively engaging with someone else and being the one to draw the other out in conversation! It’s a complete role reversal, and I have no idea what it means.
What IS going on? I have no idea, but it sure looks good to me. Can I prove that TeachLivE has done this? No. I don’t work for UCF. I’m not in any way affiliated with TeachLivE and I’m not an expert on any of this. I’m just a parent with a point of view who happened to be there at Ground Zero for something nobody understands. Not yet. The research is only beginning but my husband and I are convinced.
Numbers are what is going to make this all happen. You can draw pictures and talk up a storm and imagine and research and take meetings, but where it gets really real is staring at the column of figures running down to that bottom line. All the statistics and head counts and years don’t mean jack in the end because “numbers” means money.
Plain and Simple.
You need money to make anything happen. Money makes the world go round. Numbers point you straight toward the truth, and the truth is that the numbers say nobody trying to do what we’re trying to do has enough money.
I’ve spent the past two weeks getting some preliminary numbers together. I had a meeting with a company that runs group homes. They were a wealth (pardon the pun) of information. I learned that they will provide the staff, the training and handle just about everything related to that for you. That led to my first concrete number regarding the cost of staffing a group home. I am hoping it was wrong. I’m sure it’s not. Are you ready?
It will cost over $200K just to staff the home for 5 people. Per year.
That’s the first aggregate number in the Expense column.
Additional costs will include:
1. The purchase of a house (either downpayment and mortgage, or full purchase price)
2. Renovations to bring the house up to code
3. Refitting to create an autism appropriate and friendly environment
4. Insurance, all kinds
8. Security System
None of this includes daily living expenses such as clothing, food, medical care, transportation, and entertainment.
The preliminary expense column is now at more than $300K not including initial startup costs for the foundation (so we can do several houses) and the mortgage. Divide that by 5 residents and it’s at a minimum of $60K per year.
Meanwhile, over in the income column…an adult with autism will get just over $700 a month in SSI benefits. Even if you flunked math on your way to the top, you’ll sense that this just doesn’t add up.
All of this calculating will eventually be going into a business plan. A business plan with a big hole in the middle at the moment.
The only way to make this work is to raise the money. Every single year. Now…how to raise that kind of money???
The IEP. It’s a term that will make most people scratch their head. Is it a rock band? Another awful group dance like the Macarena? A new car in the Ford lineup? No, it’s an “Individual Education Plan” and is the only legally sanctioned torture device designed especially for use on parents.
You never, ever, ever forget your first time. CJ was getting ready to start kindergarten. He had been in a PreK class for “varying exceptionalities,” which is a fancy way of saying “really different and we have a bad feeling.” I, the parent, receive paperwork in the mail. A meeting has been scheduled on the matter of CJ Williams. I’m not sure if it’s an invitation or a royal summons. Still…it’s all about helping CJ find the right combination of people and environment so that he can learn, right? Maybe it’ll sort of be like being called to the principal’s office, except no one’s done anything wrong…exactly. We’ll have a nice discussion and sort things out.
So I dutifully took time off of work to show up for the meeting at the school. I’m welcomed and escorted to a conference room. Inside, there is a social worker, a guidance counselor, the ESE teacher, a regular teacher, a speech therapist, an occupational therapist, a staffing specialist and several others. Me and 7 to 10 other people (I can’t remember exactly, sort of like you don’t remember exactly how many cannons are firing at you as you leave your foxhole trench). They are kind. They are professional. They don’t know you. Some have children. Some don’t. They have done this many times before. They go around the room, and one by one, these nice caring people tell you in no uncertain terms how they have tested your child and compiled a list of everything he “can’t” do. He can’t do X. He can’t do Y. Every “can’t” is the sound of a door slamming shut. A body blow. Now I know how the woman being stoned at the gates of village felt (emotionally speaking, of course).
The early meetings are always the biggies, too. Everything is still completely new. You walk into a meeting with a rough idea of how your world works and what your hopes for the future of your child are, and you leave with something else. The amount of mental and emotional processing that goes on in the head of parent after an IEP meeting, if harnessed, could power a city block for a week. Theoretically, they are throwing you a lifeline, but it feels like a funeral. After the shock wears off, you cry, you flail, you rage, you curl up, you reject, you bargain, you pray. What the hell do these people know? They’re just guessing, every child is different. Where’s the door? Where’s the window? Where’s the way out of this new reality? How do I even begin to tell anyone this? How do I go about inflicting this on anyone else who loves CJ? Who am I kidding? These people have experience. They know what they are seeing. It’s 10 of them and 1 of me. What do I know? God, how am I going to make this work? God, help me.
This is how it goes.
As you get more experienced at this, you begin to build a shell. You realize that there are easy meetings where there are no conflicts, no new “can’ts,” few people and you are done quickly. Then there are the hard meetings. Often, there’s a conflict even before you walk into the room. You go in wanting something they don’t want to give, or rejecting something they insist is right and necessary. There are several ways to feel like a jerk here. You can be a jerk by refusing their wise counsel, experience and advice, or you can be a jerk by demanding something your child needs that might inconvenience the team, make the days awkward, or consume resources they want applied elsewhere. It took me a while to start believing that my expertise as CJ’s mom, my common sense, powers of observation and time-in-grade in the trenches of daily life were a skill set just as valid as having a Ph.D or 20 years of educator experience. It took me a while to learn to both respect the team’s skills and my own equally.
Because, see…the first thing no one tells you is that you are actually a member of the team. (If you are a parent and you’ve read this far, I can’t stress enough…if you take only one thing away from this blog, make it this.) The other team members can’t just do whatever they want. You have a vote. You can make requests. You can veto things. They can’t just decide to take things away. While you can’t control the show, you do have leverage, and in a room where it’s a ratio of 8:1 or higher, you need to learn how to use it.
There are what I like to call “Red Siren Words”. These words are your leverage. They have power. They set off sirens in heads of the professional people in the room during an IEP. Use them and everyone tends to sit up and get VERY nervous (think “lawsuit” here). These RSW’s are precise phrases which cue everyone to the codified requirements that schools and teams are required to comply with in the best interests of your child. Without them, the team is left fairly free to craft a plan to fit their own agenda, be it your child’s best interest, the school budget, or someone’s sabbatical plans. But use an RSW and instantly everyone in the room understands that a set of expectations has been invoked, that the parent is aware that he or she has the right to expect certain things, and that consequences could result from ignoring this.
Let’s try a few.
“Least restrictive environment.” This means that the school is required to keep your child with typical kids for as much of the day as possible. If you are fighting to find a place for all those painfully learned life or social skills to take root and be exercised, rather than have your child restricted to a single room with limited exposure to a neurotypical environment, you might want to trot this phrase out.
“Where’s the data? Show me the data.” If you are proposing to make a change in my child’s IEP (usually regarding services they are proposing to stop), I am going to politely demand the data to back up your proposal. Use this RSW to force the distinction between supported facts about your child vs their educated opinion.
Of course, the down side is that it then becomes adversarial; you against however many other people are in the room. It’s a lovely feeling. If you are naturally assertive, you may have to rein yourself in. If you’re a conflict avoider, you may need to plan to throw up in the bushes outside the school afterwards. I’ve been lucky. Most of the time, I’ve worked things out. But not everyone has been as fortunate as we were. I know more people who have taken advocates or even attorneys to the meetings with them than people who have not.
All that said, you do have a voice, but you don’t have complete control. CJ is now 17. We had our latest meeting last week. It was one of those meetings where everyone had to come. We were changing a service…taking away CJ’s occupational therapy. UGH. Luckily, I knew most of them and we were all in the know ahead of time. We all knew each other and knew the drill. (I did wonder what they would say if I suddenly decided to pitch a fit in the middle of the meeting about taking away CJ’s OT.) We go through the meeting and get to the part about removing OT, and they say, “So you agree with this?” I say, “No.” Dead silence. I then say that I don’t agree, but I guess it doesn’t really matter. I say that I wish that they would continue and it would make a difference, but I don’t really have a choice. (I did have a choice and could have made a scene, but it wouldn’t make a difference and wouldn’t really fix anything.)
I did remind them of what we are all told. I reminded them about the “If Onlys.” If only…if only we had done more therapy…if only we had done different therapy…if only we had tried this diet or that diet…if only, if only, if only. Whenever you stop a therapy, you re-introduce the “If Onlys.”
But really…If only…If only what?? He would be better? He would be cured? They all kind of looked at me and nodded. I realize almost every time I am in one of these meetings that they forget. They are these wonderful people doing their jobs and this is our child. They are telling you all the ways they are “helping.” But all you can hear is all the things your child can’t do and how your child doesn’t and may never measure up.
When you recover from feeling like you were kicked when you were down, you wonder why they don’t serve drinks at these things. Really.
I actually said it out loud this time. They all thought it was a good idea.
Have you ever had the feeling that your head was going to explode? Remember that feeling in school when so much information was being crammed in at such a fast rate and you never had enough time to process it all? It all begins so innocently. You have a question. You ask the question. You get an answer. While processing the answer, it creates the need to ask another question, and then to evaluate and process more information as things grow transform and then more questions abound. Before you know it, you’re eating the cupcakes that were supposed to go in your daughter’s lunch tomorrow and re-watching reruns of Downton Abbey to make the noise in your head just stop.
Today, I asked a question. Today it all began. Today, I met with an attorney.
There was nothing I didn’t already know. I like to answer my own questions beforehand, and then compare them to the answers I get from everyone else. It’s what I do. If I do it right, there are no surprises. No big announcements. It is what it is. And I get to be right (I love that).
So there it all was…the next steps for us in relation to CJ. It was all laid out in black and white. A process. Specific steps. The good part — it was all laid out in black and white and it was all very clear. The bad part — it was all laid out in black and white and all just too real.
CJ is going to turn 18. And he can’t just do that with a cake and candles and the keys to a new car. CJ can’t be 18 without us. The Joan Crawford Institute for the Prevention of Dreadful Parenting says so. I know. I checked online.
CJ needs a Guardian. And apparently, it can’t be us. And it can’t be just any Guardian. It has to be a Guardian Advocate. Okay.
Now…I have a question. Remember the exploding head?
Who is going to succeed us a Guardian Advocate? Who is going to do what? What on earth is the difference between a Guardian Advocate and a Guardian? The attorney says to me “Guardian Advocate. ‘GA.’ Think Guardian Angel.” Helpful. My normal snappy come back failed me in this moment. My brain really must have been full at the moment because I just couldn’t come up with anything obnoxious to go with GA. And I really needed to. (I am guessing that was God’s grace that I didn’t, so that this guy didn’t think I was a complete lunatic, because I really really need him to confirm what I already know…and I’m still working on my own answer, BTW…I’ll let you know.)
So paperwork and some more paperwork. Cost is just not even an issue here. Get it done and get it done RIGHT! Mistakes can cost you at this point. (Scary) Even worse, mistakes can harm your child. (See JCI for Dreadful Parenting, above) Back to the whole Guardian Angel thing. Someone else is going to do this instead of me?? You know how they tell you you shouldn’t mess with a Mama Bear….well, don’t even think about messing with a mother of a special needs child! (There are always snarky postcard things on Facebook about special needs moms…their outlook and attitudes. They never, ever fail to crack me up, because they are so true.)
The attorney made an interesting comment to me. “You can read a book about being a parent of an autistic child, but there is no way you will ever understand unless you are one.” That is true about so many, many things. There are tons of jokes, funny stories, sad stories, tragic stories, information and events that will just break your heart. I always say that I can laugh or I can cry. Sometimes, I just scream.
The first step is to notice that something is not completely “right”. It is particularly helpful when other people are pointing out everything that your child “can’t do”. I was told over and over to not worry about some things. “my son didn’t talk until he was 2, 3, 4” “boys talk later” “he is just an active, normal, little boy”. Then my favorites all about how he “needs a spanking”, “we basically suck as parents” “he does this or that strangely” “he doesn’t do this or that the way he “should” “
Where do you go from here? There were not the specialist and the information that there is now. We had Juno dial up. Our pediatrician went from telling me something was wrong to insisting that he could not be autistic. There were two doctors in town who would give a diagnosis. The one was self pay only. The other one took our insurance.
By the time we went in I knew the answer. He spent time talking to us and testing CJ by playing games and asking him to color, etc. He sat us down, looked at us and said “I guess you already know what I am going to say”? I liken this moment to a movie when the camera zooms in on a character and you can still hear what is going on in the scene, but the character’s voice is loud over it all as the character looks directly into the camera. I was the one being sucked away as the doctor spoke. I was in the camera as the doctor and the noise of the office went off into the background.
He prescribed medication. Now the real work started. I was introduced to a mom who had a son a couple years older than mine. She was a staffing specialist in a neighboring county and had a son in our county who was autistic. She literally “told” me who to contact and what to do. I took my marching orders seriously. I never take anything lightly. I mapped out a plan and started. I never took no for an answer. I insisted on being allowed to fill out paper work. I didn’t ask permission. I just assumed that since we qualified for services, all I had to do was fill out the paperwork and/or contact the correct person. Naively, it worked for me. I wasn’t that thrilled with it taking almost 6 months to get everything into place. I found out later that there was up to an 8 year waiting list for any services. He started getting ST and OT at school 2 months after school started, thanks to his teacher’s persistence. I found out later that there was an 18 month waiting list to get evaluated.
I started navigating the labyrinth of the world of “special needs”. Everything involves research, paperwork, meetings, numerous phone calls and lots of persistence.
When I was first asked to do this blog, my answer was instantly “no”. I had actually tried it before. I had tried to journal. I started a blog. But I’m the mother of an autistic 17-year-old son. Creativity and extra time went by the wayside right about the time my water broke.
Besides, I think I feel like everything I might say has been said before and usually over and over again. Autism, to me, feels unbloggable. Jenny McCarthy, I am not.
The buzz about autism…the medical literature…the national dialogue…the educational debate…all that has swelled from nearly nothing when CJ was born to an overwhelming onslaught of information, advice, and criticism about every aspect of my child’s personality, performance (usually lack there-of), and perception of the world he inhabits…an onslaught that often sends me screaming to my therapist immediately after picking up my own prescriptions. Somehow, it’s become a bumper sticker war between breast cancer and autism and it’s anybody’s guess who is more “aware.” Early intervention, ABA, IEP’s, therapists, scholarships, Challenger football, Disney Dreamer and Doer awards, mainstreaming…..
And then your autistic teenager turns 18. It’s time to “transition.” Time to “age out.” And suddenly, no one’s talking. In fact, there’s no sound at all.
If an autistic teen turns 18 in the forest, can you hear his mother scream?