New Normal

CJ Cap & Gown with DiplomaIt’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.

But how?

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.

Weeks went by. Months.

And then I got the call….

Destination Unknown

129351-simple-red-square-icon-people-things-hat-graduationI thought I was going to be anxious and upset.  I have no plan.  I don’t have a check list.  Nothing is organized and I don’t know what the next steps are supposed to be.  I realize that we are never going to be as supported and connected to the community again, and that should leave me feeling terrified.

But I’m not.  I’m actually ridiculously calm.

We have some options, which I’ll talk more about in a future post.  It’s not hopeless.  We’re going to be okay.  I don’t know what’s going to happen yet, but somehow, maybe for the first time in my life, that’s okay.

The Graduate

The Graduate

I’m not sure yet how much CJ has grasped that things are forever changed now.  That he won’t be going back to high school in the fall.  That his place in the world is different now.  Everywhere he’s ever gone, he’s always been loved and adored.  Will that continue?  What if it doesn’t?  How much harder is it going to be for CJ, outside of the protective envelope we’ve spent so much time building and nurturing?

I don’t know.

Right after graduation, CJ was off to 8 weeks of “college” at the ARC in Jacksonville Summer LIFE program.  So for him, it’s still business as usual.  Just a summer vacation before life goes back to normal.

A normal that’s not there any more.

Open Letter to Lake Howell High School

I wanted to find a way to thank Lake Howell High School for the amazing experience CJ has had for the last six years. Posting an open letter was the only way I could think of to reach as many people as possible. So, here it is.

Dear Lake Howell High School,

I wanted to write this letter to the whole school from our whole family. The last six years of CJ’s life have been some of the best of his entire life. From being in the dugout at baseball games to the side lines of the football games, his life just gets better and better every year. CJ thinks he owns the school and it is all because of all of you. The administration, the coaches, the teachers, the assistants in his class and most of all the students. You have all accepted him as one of you and treated him like a rock star.

The football game that he got to play in was a highlight of his life that he still talks about. Working in the cafeteria has made him feel like he has a purpose. He loves being on campus. He loves the bus drivers. He loves everyone there so much. I wish I could name everyone of you personally.

Not all kids with special needs are treated the way CJ is at school. Not all schools go the lengths that Lake Howell has to make him feel included. I know when his class first started there everyone was nervous. It only took weeks for everyone to realize that CJ was really just one of the guys and for everyone to treat him like one.

There is not enough money to buy what CJ has gotten at Lake Howell High School. I wish there was some way to shout to the world how wonderful Lake Howell is.

There is no way for our family to begin to thank everyone enough. Lake Howell will always be CJ’s school and he will miss everyone more than you can ever know.

Thank you.

Kathleen Williams, aka, CJ’s mom

Time is Ticking

hour-glassTime is ticking….

May 23 is the end of the school year and the end of the only life CJ has ever known since he was four years old.

May 23. In case you were wondering, it is just over five months away.

This terrifies me. There’s no blueprint. There’s no official plan. There’s no more track of upward and outward. In fact, unless I figure something out, it’s basically the opposite. What happens next? What are our short term goals? What are our long term goals? What are the backup plans? What does CJ’s future look like after he ages out of the school system?

Nothing has ever terrified me more.

He really (really, really) wants to go back to “college” . He attended one of Arc Jacksonville’s Summer Experience four week sessions last summer. He was out and living large, without mom or coming home each day, and with an invisible army of support behind him, he was making it happen. Yeah, that sounds like college.

He might be able to go to both sessions this summer. College x 2. And after that…? After that, it is all me, all the time. Me with CJ at home. Me without the daily break for both of us. Me without the system support to help me help CJ make sense of his changing world. I had one friend describe it as being CJ’s the cruise director on the Good Ship Nowhere to Go. That is NOT what I signed up for. I would be miserable. He would be miserable. What 22 year old wants to hang out with his mom all day every day?

Is there help? Yes. Are there other services? Yes. But there’s no framework of the school system to help me sort it out. It is once again a labyrinth filled with flaming hoops to jump through, over and over.

What about a job, you say? What about putting all these life skills and experiences of CJ’s out there in the community where he can keep growing and contributing? Right. There’s the Vocational Rehabilitation, which is part of the DOE. They work with people with disabilities to help them find jobs and provide support. Sounds great, right? In reality, they are overworked, underpaid state employees doing their best with limited resources. Like so many services since we started this journey, the squeaky wheel gets the oil. Guess who gets to spend the day squeaking now? And the nicer the squeaky wheel, the faster, sometimes. It’s a delicate balance between pleading and demanding, and most day’s I favor the latter.

CJ’s school has a program where he goes to “work” at local businesses for a few hours each day. The school provides transportation and someone to go with him and coach him. He has worked at a YMCA, Goodwill, a grocery store and several restaurants. He has enjoyed almost all of them. He loves to feel useful. Don’t we all?

The problem with all of this is after he is out of school, that program goes away. What will I do? Once that plug is pulled, where do I turn to plug it in again? If he manages to get a paying position, even for a few hours a week, how does it all work? How does he get there and home? Who helps him to make sure he is doing what he is supposed to be doing? Who helps him keep the job? Who lets me know when there’s a problem so I can jump in with support? So many of the people who manage to get jobs lose them when they can’t perform without the supports they so desperately need. And if he gets a job, I am now the taxi, personal assistant and job coach. What will that do to my sanity?

There is a bus service through the local public bus. We had to apply, get a doctor to fill out a form and go for an in person interview. He was eligible. This will provide transportation to and from work. I have heard the bus trips can be quite long as they go door to door to pick up and drop off. CJ has always loved riding the bus. I am hoping it will give us both more healthy time apart.

He wants to move out. A week doesn’t go by without him asking about “college”, the apartments (“the ones over there with the pool”), or the “little houses” at the Arc Jacksonville. Not “if”, but “when” can he go. What on earth do I tell him? What if the answer turns out to be “no?”

I’m trying to make sure he gets to do every senior year moment possible. His name is on the senior class shirt. He went to the Homecoming dance. He walked in senior night with the football team. He already has plans for prom. I know his experiences will always look a little different, but I want to make things as “normal” for him as I can. But I’m always aware that I’m giving him this normal, knowing it’s unsustainable for much longer.

I still wake up in the middle of the night and I can’t breathe. I still wrack my brain trying to think

of one more thing, one more option, anything I haven’t done, anyone else I can contact.

I love my son, but he is almost 22 and the world is coming at us both. Both of us are anxious. Both of us are hopeful. But the future is all on me. And so far, there’s no real answers and no real plan.

Help.

College Summer Experience

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Well, it happened. CJ went to college, at least one summer session of a college experience at the Arc Jacksonville. He had never been away from home for more than four nights. The was four weeks. FOUR WEEKS!!!!

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His room with all things green

We applied and I waited anxiously for an answer. I’m pretty sure we were one of the first applications. I waited very impatiently. We got our answer. He was in!! We went and toured the apartments and met the people involved. CJ liked the apartment and was excited. We got the supply list and I was off. I made the obligatory trip to Ikea and they cooperated with all things green down to green picture frames for $.99. I packed, checked off lists and loaded the car.

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The pool where the girls were

We got there and went to the parent orientation. We went to his apartment and he told me good-bye. What?? Nothing is set up. It’s MY job. I need to prove I’m a good mom. Well, OK. I could set up. We had almost 3 hours. It took 20 minutes. The other parents were still setting up. We waited around. He told us to leave, multiple times. Finally, we did. I was all prepared for the flood of emotions. They never came. He was fine, so was I.

I knew he would want to tell me good night and I wanted to reassure him that he was fine there. He hadn’t called and I wanted to catch him before he went to bed, so I called him.

Me—Hi. How are you?
CJ—I’m talking to a girl. I gotta go. I’ll call you in the morning.

Only, he didn’t. He was fine, really fine.

The pattern continued with me calling him begging for information, him having to go. He did talk to other family members and friends, usually over FaceTime. He was always having fun and usually had to go as “the guys” were leaving or there was a girl involved.

After week one, I got a report. It said he likes girls, check. He ate all his snacks the first day, check. He ate other people’s food, check. He was having a great time and loves hanging with the guys, check. Everything was going as expected. Better than hoped for.

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Cooking dinner

He had to menu plan, shop and cook. They took field trips to a baseball game, the museum, the zoo and the movies. They rode the bus and practiced crossing the major intersection near the apartments. He loved everything. I never heard a complaint.

I got week 2 and then week 3’s reports. The consistent theme was that he ate all his snacks day one and ate other people’s food.

I couldn’t reach him about midway through. It turns out his phone went in the pool. I guess he’s more normal than I give him credit for.

The weeks flew by. It was time to come home. It took longer to get out than it did to drop off. Stuff was left in his room and I had to go back in twice. His keys were lost and then found. His wallet had been missing for two weeks. The big problem with the wallet was that his ID was in it. I was starting to wonder if it was all a ploy to stay.

We left and came home. The whole way I was anxiously hopeful that there would be changes. It was instantaneous. He walked through the door and everything went back to the way it was. I was crushed. All that and nothing…or was it?

He does his own laundry. He comes with me to the gym and rides the bike for as long as I’m there. He cooks when someone else comes to cook with him. He won’t cook with me, but I am his mom, after all.

He talks about it all the time. He tells everyone how great it was. His favorite thing changes from the pool, to the apartment, to the zoo, to just hanging out with the guys. He wants to go back. He won’t stop asking when he is moving. Not “if”, “when”.

School has started for his final year. The countdown has begun. It’s not as scary now. There is hope where there was none before. The best part is that things are more normal than I ever thought possible.

TeachLivE 4– A Little Too Real

TeachLivEThere are times when you feel like you have entered the twilight zone. There are times when things that aren’t real feel just a little too real.

A few weeks ago I attended the 4th Annual TeachLivE conference and entered an all too real virtual reality that I was unprepared for. I was especially excited as they were going to unveil the new kindergarten avatar modeled after CJ. I had been working with the young, future PhD, also known as CJ’s former teacher, to develop him. I had provided evaluations, videos, photos and feedback to make him as real as possible.

I loved getting preliminary drawings and giving my input. He, once again, looked remarkably like CJ did back then. He does not wear green as back in the day, CJ did not always wear green. I had seen photos of the avatar and had heard what he would be able to do. He was still in development, but they were going to unveil him to the public.

The learned their lesson last year and I was NOT speaking. They mentioned who I was in the opening session and I waved my hand. No one would even remember. I was safe and incognito this time.

The breakouts began. They had stations in a large open area. Each station had it’s own screen for presentations and casual seating, but was open to the entire area. I sat front and center so I could take some video. I was really excited. I’m a pro at this. I’m ready.

Kindergarten AvatarsIt starts with a little girl and kindergarten CJ, who goes by Martin to protect the innocent. They were sitting on a rug in a kindergarten classroom. The little girl is vivacious and talkative. She “helps” and just can’t stop herself from answering for Martin. (Reminds me a little of me.)

They ask for volunteers. One of the PhD’s got up and interacted with them. She tried to engage Martin several times. He would hesitate and hem and haw. The little girl would interrupt to “help”. After three tries, the PhD just switched to the little girl.

I was a little disappointed. These were teachers, PhD’s, PhD’s who teach teachers. It was only the first one and they were only testing it. They weren’t set up to teach a lesson and not all of them deal with children this young or ESE students.

The second person got up and only tried once to interact with Martin.

A strange thing started to happen. I started to get upset. My Mama Bear was starting to rise. I wanted to step in and I wanted to explain. I wanted to protect the avatar.

Now my internal dialogue starts.
“It’s an avatar.” “It’s not real.” “It’s not CJ.” “They are not used to doing this with this avatar.” “These are professionals.” “These are only a few minutes each.” “This is not real.”

Kindergarten at tableThe third volunteer gets up. She actually kneels down so she is at eye level with them. The technology allows the interactor to see where you are and where you are looking. She starts out prepared to get both of them engaged. She tells them they are going to write a story together. She says it starts out, “Once upon a time.”. She asks Martin to think of a person, place or thing he sees. She quickly realizes she has given too many options. She ends up asking him what animal he has seen. The little girls keeps trying to “help”. The PhD keeps telling her that they are going to give Martin some time to answer. Martin rocked back and forth. Martin repeats, “See. See. See.”

I was so excited that she was going to be able to draw him out. She obviously has worked with this age. I was impressed. Then she decided to help him out. She says, “The animal starts with a C? It must be a cat”.

OMG! NO! NO! NO!!!

I take a deep breath and narrowly escaped my outburst. She is trying. There is a large group watching. I have no way of knowing her experience or expertise. I have myself under control now.

She now wants to know the cat’s name. Martin rocks back and forth again. He repeats, “Cat. Cat. Cat.” I’m holding my breath by now. The tears are welling up and spilling over. The PhD decides he wants the cat to be named Cat Cat. I jump up and run out. The bathroom is right behind me. I leave all my stuff there. I can make it. I can do this without making a scene. Or not…….

My voice breaks as I really start to cry. I run into a bathroom stall. I have been thrust back in time. It was a true PTSD moment. I had so many memories flood over me. I thought all this was safely filed away in labeled folders to only be opened when I needed some information.

I just wanted to scream at the screen, at everyone. I wanted everyone to see how he was trying. He had an answer, he just couldn’t get it out. I wanted to protect him. I wanted to make them all understand.

I got myself together. I come out of the stall and the UCF genius creator of TeachLivE was standing there. She was alerted to my breakdown. So much for no one noticing my “quiet” exit. She got it. I told her that they didn’t understand, that they weren’t listening. I was completely irrational trying to explain what happened. She got it on every level. Her son has Tourette’s and is now in college. She remembers her son. She knows, she really knows. While we were talking in the bathroom, because where else do you talk at a PhD conference at a University full of conference rooms, another PhD came in to check on me. Once again, my nice quiet exit.

The genius comforts me simply by getting it. She wants me to know how valuable this is.

Session 2-

Now I’m standing in the back as there are no more seats, which may be a better place for me. A PhD came up to me to tell me her future ESE teachers need this. She thanked me over and over. She said her teachers will do what the PhD’s did over and over and ignore the ESE child. She said this is a safe way for them to make mistakes and learn. I know all this, but it doesn’t stop the pain.

As the day goes on several people talk to me to thank me. They are really excited about the possibilities for this avatar and the others. I decide if the prospective teachers can manage even a fraction of the suspension of reality that I felt, it will be amazing. What if even one child can be spared the pain? What if even one parent can be reassured? TeachLivE just continues to change the world.

Being CJ’s Sister

Keep Calm BrotherSince my blog is designed to showcase life with CJ, it is easy to forget that CJ is, in fact, part of a family, not the center of his own homecoming king , football star , media hound, own private avatar world .  CJ has a sister.  A 13 year old, glorious long haired, smart, sassy, gets the grades, cheerleader, tumbling, “Don’t touch my stuff”, funny, full of attitude younger sister.

She annoys the crap out of him and he returns the favor. In fact, he “ruins her life” on a regular basis, but not for the reasons you think. Elizabeth has never known a life without CJ.  A life without adjustments for autism is unknown. It’s not even relevant.  CJ is her brother just like the sky is blue.

He irritates her. He steals her candy. He cramps her style, gets in the way of her social life and he is rude and obnoxious…which is exactly what I said about my own siblings, growing up.

See, she knows that our lives don’t always look like other people’s lives.  She gets that on a mature level that fills me with awe at times.  But she doesn’t think that special needs make you different, because you are you.  Period.

Most adults don’t get that.

She has a friend with Downs Syndrome.  She gets so mad when her friend gets a “pass” for her disability that let’s her get away with stuff she shouldn’t. She has actually uttered the words, “Bonnie is just like everyone else.  She is no different and it is not OK for her to get away with it.”  It may sound a bit tough at first, but think about it.  Elizabeth know exactly what Bonnie can and can’t do, and she’s not looking at Bonnie any differently that any other friend working the system.  She sees the whole person and not just the overlay of the disability.

I let Bonnie’s mom know that she is “just like everyone else”.  She loved the moment.

Elizabeth has started taking some creative writing classes, and I’ve encouraged her to add her voice to the family story by writing about her life, and part of that includes life with CJ.  So today, she’s my guest blogger.

Here, in her own words, is a slice of a 13-year-old’s life with a brother’s autism.

“Many of you don’t know this about me, but I have an autistic brother. I’m sure you are wondering what even is autism? Well, no one really knows what it is, but we have found out that it is an intellectual learning disability. This means that it takes longer for the brain to comprehend things then an average brain. This is not a disease, it’s not something you can spread, cure, or catch. It is something you are born with. It is very different for everyone who has it. It is not something someone “suffers” from. It is a pretty amazing thing.

Some people that have it are socially awkward, but some fit in perfectly fine. In my brother’s case, it is a blessing. He does not “suffer”.  He has had some pretty amazing things happen to him because of this. He has met incredible people and done things that an average guy would not have been able to do.

My brother’s name is CJ and he is 20 years old. He goes to Lake Howell High School. This is his 2nd year being a senior. He still lives at home, because he can not be left alone. He is not able to call 911, if there was an emergency. So, he still lives at home when most normal 20 year olds are out of the house. We are making CJ as “normal” as he can be. He is currently working on getting a job, as many 20-year-olds would either have a job or be working on getting a job.  We have also, been working on moving him out of the house and into more independent living for the past couple of years. 

What is it like having an autistic brother? Not very many people have asked me that to be honest.  If I had to sum it up in one word, I would say amazing. It is pretty amazing having an autistic brother because I get to do some pretty cool things and be part of an amazing world. I get to see him and his friends change to become better people.

CJ & E FSU on Couch about 3When I was little I didn’t really think CJ was very different from anyone else. Then, I gradually started to notice that my friends brothers didn’t need someone to stay with them at the house. Their brothers were different or that CJ was different then them. I don’t really see it as a bad thing. It’s just hard sometimes when we want to do things or I want to have my friends over to the house. My house is not quiet. It’s never quiet. Some of my friends get intimidated by CJ, but most of my friends like him or just don’t really get bothered by him.

I get really offended when people talk about autism and they aren’t a scientist. They talk about how it affects people or how it feels to have it. I can get really worked up about it. It also bothers me when my friends talk about CJ in a bad way. It’s like I’m the only one that can talk about him that way, you know? I have told some of my friends that I don’t like it when people talk about CJ like that and they say that they are the same way with their brother.

I get very protective about CJ. Even if someone looks at CJ with a nasty look, I get pretty protective. One time I was ranting on to my friend about how annoying CJ was being and he asked me, “What kind of things does he do that make you so mad?” .  When he said that I wasn’t really sure what to say, because it’s complicated to explain. When I say what he does people don’t think it’s that bad, but when he does it everyday for years and years and years it gets old and irritating pretty fast.

CJ had never been away from home before until a few years ago what he went to his first camp in the summer for a weekend. He did awesome and so did the rest of my family. We got to be away from him and alone for more than a couple of hours. Then, a few months later, there was another camp and this one was for almost a week. As soon as my mom heard about it, she quickly signed him up, because he loved it so much. He did great on that too.

Now, for a couple of years we have tried to sign him up for as many camps we can in the summer. Some are for a weekend, some are a week and some are day camps. Well, this summer we found a camp that is at a college campus and is for 4 weeks. We signed him up as soon as possible and the other day we found out that he got in and is going. We also found out the he is eligible to live at an assisted independent living place in Jacksonville. This is going to be such a new experience and is such an amazing thing.

Kids on Field

Now, there are a lot of incredible things about being CJ’s sister.  When I am at the high school I am automatically known as CJ’s sister.  It’s okay to be known for that, because a lot of people know who I am so I already know the football players and baseball players. It’s a nice way to get my name around. I also, get to know people like Blake Bortles. He is a pretty great guy that does amazing things for CJ and our family. Also, I have met a few of my friends through CJ, like one of my best friends, McKenzie. Her brother did Challenger with CJ so we started talking and hit it off. My friend, Hollyn’s, brother also did Challenger with CJ.

I’m okay with one of my titles as CJ’s sister.  CJ is basically a rock star and pretty much everyone loves him, so being known as CJ’s sister is not a bad thing. Most things that CJ does most brothers do so I can relate a little bit when my friends and I are complaining about our brothers. Being CJ’s sister is a pretty great thing, though. I get to learn about different types of disabilities that people all over the world have.

I have learned so much by being CJ’s sister. I have learned about how to be patient, not only with CJ but with other kids also. I have also learned about autism, especially and things like Angelmans Syndrome and Down’s Syndrome. So to sum this all up, being CJ’s sister is pretty cool. I would never be the person that I am and know the things that I know if it wasn’t for him. I love you CJ.” Elizabeth Williams, age 13

Sometimes you forget how cool it is to have a 13 year old teenage girl who can really understand and love this much.  I love you both!

How to Get Into College

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I have many friends with kids near CJ’s age. They are in college, applying to college or even just graduated. I have spent many hours talking about requirements, distances from home and especially, money. I have spent even more hours talking to moms and dads of special needs kids about our options. There aren’t many. The State of FL alone has 12 state colleges, 28 community colleges and 33 private colleges. What are the options for young adults that can’t go to a typical college setting?  There really aren’t many. There is a big difference between going to college as you and I would, going to a trade school or getting a job and what it would look like for CJ.

Homes and Communities

But first things first.  First, we need to find a place that CJ can live as independently as possible as HE can live. How independent does he have to be? What does he need to master before he can move in?

There are residential facilities more similar to a retirement community where there is some level of supervision.  These are more like somewhere that you would expect to visit your grandparents. They can have a home or apartment with room mates or even their own place.  They can offer meals and recreational activities or be completely independent.  They will often offer transportation.  The idea is to live as independently as possible.

Right now, I am focusing on two prospects. Both require CJ to be more independent that he is now and both are still in development. I have not toured either of the facilities. I do have a target January 2018.

I have a friend whose son moved to a “Group Home” under unpleasant circumstances for the safety of all involved. It was not what she had planned. She had dreamed and planned of a home or community atmosphere where he could live a full life. Things did not work out that way. Currently, in the State of Florida, the only way you move to a group home is “Life or Death” situations. I have actually said those words to the “powers that be” and been told “yes.” Yes? Seriously? That’s the best we can do? Basically, the person must be a danger to themselves or others. There must be no one able to care for them. (unwilling does not count) You can’t drop these kids off at a fire station. I had one friend ask seriously in desperation what would happen if she left her son at a hospital and she was told they would “pursue her for abandonment”.

My friend’s son was actually doing well. They had talked of him “going to college” for years. His older siblings had gone to college and moved out. It was what you did in their family. He was just the last to do it. He had the care he needed and was doing well. The interesting thing is that everyone I have talked to whose child has moved out has said that they are doing better outside the home as they are able to have their needs met. The families are happier as they are able to reconnect their marriages, friendships and families. They almost all, however, felt guilty. I had one mom tell me the house wasn’t up to her standards of cleanliness. All of a sudden it hit me. It’s not up to your standards. It’s not going to be. It’s not supposed to be. I looked at her and asked what she thought his living conditions would have been like in a dorm or worse, a frat house. Have any of you been in a frat house?

So, what will it look like for CJ? That is what keeps me up at night.

Tours

I took CJ with me when a group went to look at a property for a possible community. It had been a sort of boys camp prior. It was abandoned, but had buildings on it. He was VERY irritated with me that he was there. I finally asked if he would like to go to move there and live with his friends. It looked like a camp and he loves camp. I just wanted him to shut up. As he continued to run his mouth, I started to have fantasies about him living at a long term “camp” where he was safe and having a great time, but NOT making me crazy. I told him he could “Go to College”. “Oh, OK. That would be good.” Nothing came of any of it as the property was not usable. I forgot about it.

When school was starting back up in the fall we kept running into kids who were getting ready to start college or were staying local. One day we were driving and he asked out of the blue, “When am I going to ‘college’?” I was caught off guard. I would have just answered, “you aren’t going to college”, but there was something to this question. He stated it very clearly. He wanted to know. I probed further. “What college?” CJ-“That place where you took me with the buildings”. Me-???? Light bulb moment. “College”. “COLLEGE!”

He wants to go to “college.” He wants to move out. He wants to live with his friends. He wants his own life. He is 20 years old. What did you want when you were 20? I was at college and dating my now husband. I was certainly NOT living at home with my mom. You’re welcome Mom!!!
Now………How to make it happen?

Colleges

There are programs at colleges for persons with intellectual and developmental disabilities.

UCF has a program for adults with Intellectual and Developmental Disabilities http://ies.sdes.ucf.edu/

UNF has a program http://www.arcjacksonville.org/college-experience-oct/

Marino Campus in Fort Lauderdale has another program http://marinocampus.org/

I have met people involved in all these programs. They are all amazing. They all give individuals with intellectual or developmental disabilities a chance to further their education. These programs are not designed to get a regular degree.  Some individuals with special needs can attend colleges with or without accommodations and can complete degrees. There are persons with all different disabilities including autism with degrees even Ph.D.’s. These programs are not for those people.  These programs are designed to be more of an assistance as a transition.   They all give individuals a chance to move out and be with their peers. They are all “college” programs. They live in an environment where they are more like a dorm situation with organized activities and classes away from home and yet not completely independent.  I have not heard one negative thing about any of them except the normal monetary concern about college. Here’s the problem for me. It will cost as much to send CJ to “college” as my daughter and we can’t do that. We certainly can’t do it indefinitely. I know people who were on a 5 year plan. If you get a master’s, you might be able to add two more years. Even with a Ph.D., you better be done in less than ten years. Ph.D. CJ is not likely and I need a permanent solution.

There are summer programs for adults like CJ.  There is one offered through an assisted living facility in Jacksonville that is 4 weeks. It is on a college campus and is a sort of cross over that lets individuals try the program to see if they would like to attend the college or would like to move into the residential location. I look into the details and I was crushed. He has to be able to take his own medication. He has never taken his own meds, and I have always know he never would. We are out. I cried. It just feels like every time we think a door is opening, it feels like someone slams it in our faces.

Changes

BUT.  Yes, but. Over the holidays he started shaving himself with a razor. A real razor. I have no idea why he decided to. He nicked himself pretty good. My first reaction was to panic and yell at him and tell him he shouldn’t be doing that, etc. Some how I managed to think before I spoke. (The magnitude of that is more than you know.) I realized that I have hacked my legs up with a razor more than once. I mention to a few men what happened and every one of them shrugs and tells me that he still has days when he cuts his face up.Razor

 

 

 

Maybe I needed to reevaluate this whole situation. Several different people told me about medications options. You can order medications in packets by doses, so instead of bottles of medications, you get packets with the right combination of medications for the time of day. Some facilities will actually hand the medications to residents. They just have to actually take them independently.

Maybe I jumped the gun here. I call to find out what the facility will and won’t do. I spoke with a very professional young woman who put me on hold twice to get clarification. Answer: They can’t physically do anything. They can’t hand him anything. They can’t tell him which packet to take or not take. He must do everything independently. I had to hang up. I was so disappointed. Now, I was really crushed. There was nothing more I can do. He does have limitations, no matter what I want to tell myself or what others want to tell me. He can’t do this.

I emailed a friend as I couldn’t even talk. She emailed right back. She wasn’t buying it. CJ has surprised us again and again. She said we just need time and a plan. There are all sorts of aids. She sent me several links for ways to package medication for seniors and others.  I started to feel some hope as I started looking. You can make your own blister packs with the dosages. They even sell machines that lock that will dispense the correct dosage on the correct day at the correct time. It will even sound an alarm and/or flash a light. Who knew?

Hope crept back in. I started to get excited again. (tentatively) How long did we have? A Plan. A Plan. All I need is a plan. I can conquer the world with the right plan.

I order the simplest option, small zip lock bags with a write on label. I fill them with each dose and use a different color marker for AM, 3 PM and Bedtime. I wrote in the days and separate them in a plastic container.

I had CJ come in and started with giving him the packets. He got irritated, and I got worried. Maybe he can’t do this. And then tells me it is “not his job”. Now, I’m irritated….and hopeful once again. Step up, Boy!

As I watched, he took the crusher, crushed the pills and took the medicine.

?????

It’s that easy? All this time and worry and it’s that easy?

Well…..yes and no. We still have some fine tuning to do. He got upset with me one day because there was no Tuesday. There was an extra Thursday packet, but no Tuesday packet. He simply couldn’t take Thursday on Tuesday.

I can work with this.

I made a chart that is color coded to match the markers on the bags. I laminated it and got a green (of course) dry erase marker to check off each dose. I do love a good chart and laminator.

He tells me regularly that it is “not my job”. I tell him each time that he has to do it if he wants to go to college. Do you want to go to college? Yes. Then do your own medicine. Oh. That’s different.

He still needs to be prompted. He still isn’t opening the one capsule he needs to I still keep hoping that he will just wake up one day and swallow his pills. That would make the biggest difference. He routinely swallows huge wads of food. When it comes to pills, however, he is like the dog that coughs up the pill no matter what.

I can still work with this.

The biggest lesson here is that I need to remember that no one knows what he can and can’t do. We can only move forward and try everything. I have to continue to remind myself that it doesn’t have to look like it looked for me or will look for my daughter. We can’t keep underestimating CJ.  His future holds amazing possibilities and the options are growing.

CJ the Avatar

keep-calm

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/

Martin

Martin

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 with Martin

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.

Ethics

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 Charlie Hughes and Dr Hines

CJ with Geniuses Dr. Hynes & Dr. Hughes (Missing Dr. Dieker)

The Future

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.

Details to follow.

TeachLivE Comes Home

TeachLivE Part 2

welcome-to-my-home-sweet-homeA 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. 

Day one—

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. 

Day Two—

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.