Archive for Kathleen Williams

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

How to Get Into Collegekeep-calm-and-go-to-college-19

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.

Sweet Summer Time?

The-summer-2015-is-coming

Sweet Summertime

Summertime.  After the busy school year, you just dream of sleeping in.  Lazy days.  Trips to the beach.  We have Sea World and Aquatica (Sea World’s Water Park) passes.  They have special summer concerts and night time shows.  It is really fun to go at night when everyone is leaving.  We don’t have a pool, but lots of our friends do.  I even dream of just binge watching some TV. 

Elizabeth

What does it look like for my daughter?  Sleepovers until I say no.  Party after party.  BBQ’s.  Camps.  Volunteering at church for VBS.  She is gone more than she is home.  My job is being a taxi service as much as she can talk me into it.  Her summer is like the summers you can only imagine. The only way her summer could get any better is if we actually lived at the beach or had a pool.

CJ

What does it look like for CJ?  No Sea World.  He hates crowds and will get so over whelmed that he will melt down and take you down with him.  He doesn’t do sleepovers.  He certainly doesn’t want to sleep at your house unless he is out of town and has no option.  He definitely does NOT want you to sleep at his and absolutely positively NOT in HIS room.  We call it “The Forbidden Zone”.

People with autism just don’t have regular “friendships” like my daughter does.  They might like each other and even tolerate doing things together, but they do not “spend time together” the same way.  A friend recently said that it makes her sad that her son has no friends to spend time with.  At graduation this year, all the kids were so excited and so happy CJ had come to see them.  They were taking photos with him and signing yearbooks.  They stood in front of him and invited each other to come over for open houses and parties that night or that weekend.  They are great kids.  Not one invited CJ to so much as stop by.  Were they horrible people?  No.  Were they trying to exclude him?  No.  It just never occurs to anyone to include him with their other friends.  I don’t think he notices, but I do.  Every time it starts to look “normal” or as normal as we can get, then it doesn’t.

One of the highlights for CJ this summer was volunteering at VBS.  I had told them if they could come up with something for him to do, I would volunteer as my daughter was volunteering.  No pressure.  It was fine with me either way.  I made that clear.  I got a phone call days before it started with an apology that he hadn’t gotten back to me sooner.  Me….not a problem.  I had told him no pressure.  Then the shock….they had a job for him.  Me…???????!!!????  What is he going to do?  Security.  Me……..  Security?  He will be helping the guy doing security.  They will walk around and make sure no kids are escaping, get bandages if needed and just be a presence.  No mention of my job.  I don’t even care.  I’ll do anything.  CJ has a job.  I do make it very clear that if for any reason it doesn’t work, we can stop at any time.  If the security guy just doesn’t want him to do it, let me know.  No hard feelings.  We go to the volunteer meeting. They hand out shirts and jobs.  My name is never called.  I ask.  I have not been assigned a job.  No problem.  I’ll show up and pitch in where needed.  This way I can take CJ and leave if things go down hill.  We are there no more than 15 minutes the first day when both my children ask me to leave.  I make sure everyone has my number just in case.  The other moms look at me like I’m crazy for sticking around and tell me to run for it!  I do.  I get my house clean, run errands, meet a friend for breakfast and even get my hair cut.  What a gift!  CJ loves it.  LOVES IT!  He tells everyone he talks to that he has a job.  A job?  He is “working security”.  Everyone has the same confused reaction.  Security?  Yes.  At VBS at his church.  I got more calls than I can remember in a long time.  CJ said he has a job working security at VBS?  Me…yes he does.  He is still talking about doing it again even if he has to wait until next summer.  Did I mention before that I LOVE MY CHURCH!

Probably the biggest highlight of the summer for CJ is CAMP!  It is a sleepover camp.  The first time he went I was a wreck.  Not too much of a wreck to take off for the beach, but still nervous.  He is so excited that he keeps asking me insane questions over and over.  When does he leave?  What cabin is he sleeping in?  How would I know?  We talk about all the activities.  What are his favorite things to do?  Swim.  Games.  Seeing friends.  He can’t wait to see “his girl”.  Who is “your girl”?  He doesn’t know yet.  He will have to see who is there.  I asked about this.  They told me that each time he goes to camp he picks a girl and then stalks her all weekend.  She is usually a typical buddy.  They always tell her that he is harmless and he doesn’t come within 10 yards of her, so no big concern.  Days ahead of time, he wants to pack.  OK.  Get your bag and bring me some clothes.  He brings his duffle bag he uses for camp filled with every pair of underwear in his drawer and a bathing suit.  Well….  You might just need a few more things.  He goes and has a great time! 

He does two more camps this summer.  Both are day camps.  One is Camp Shriver.  It is part of Special Olympics.  It is FREE!  Did you read that right?  FREE!  They use a local high school where they have use of the gym and pool.  He swims every day and loves every second of it.  He comes home and tells me about who he saw and who he likes.  He also tells me about who he hopes won’t be there or won’t be in his group the next week.  Some things are just the same for typical and special needs kids.  There are just some people we like more than others.

How do we get here?

You know how you plan your summer and summer vacations?  You figure out a budget, pick locations, find rentals or hotels, decide on camps and other activities.  If you are my daughter, the biggest obstacles are time and money.  If we had the money, she would be at camps one more awesome than the next until it was time for school to start.  She would have nothing but parties and fun with friends.

If you have a special needs child, it looks very different.  First, you have to find possibilities.  What camps are even available?  Day camps or sleep over camps?  What are the costs?  Where do you want to go on vacation?  What options are there for rentals?  What can your child tolerate?

When considering a camp, first you have to find out if they will take your child.  I have been extensively interviewed.  Some camps require a face to face visit before accepting your child.  The child is the other problem  After the age of 22, most camps won’t take them.  The problem here is that unlike most 22 year olds, they still can’t stay alone.  Can your child sleep away from home?  Will the camp provide the needed supervision?  Will the camp give your child medication?  Will your child be kicked out? 

How do you get information?  Like anything with special needs kids, it is mostly from other parents.  People post on Facebook, email, call and even text.  There are web sites and suggestions from schools.  We are talking desperate here.  I saw one post that said “Does anyone know of a sleep away camp that won’t throw my son out?”.  She was serious.  One mom posted to pray that her son made it through the week this time.  I talked to parents who had been thrown out of camps before the summer was half over.  I ran into a mom about half way through the summer who has three boys with autism.  Yes, you read that right.  Three.  She was asking, like we all do, what we were doing this summer.  The question is not just polite courtesy like it would be with my daughter.  It was quiet desperation as she explained they weren’t eligible for one camp and she had heard of one that we were going to and that she HAD to find something else to get through the rest of the summer.

I have been talking to friends all summer whose kids are making them nuts.  Their kids are fighting.  Their kids are bored.  I understand.  I really do.  I also can give you a list of parents who would kill for those complaints.

The future

What happens now?  What does the future hold?  As our children turn 22 and “age out” of schools and programs, what happens to them?  What happens to our other kids?  What happens to our families?  Right now, I don’t know.  I have hopes and dreams like everyone else.  There are more options every year.  A summer job would be great.  As he gets older, I would love for him to get some job experience.  I would love for some different camp type options.  When typical kids get older, they often work at the same camps they went to as kids.  They have started having some of the special needs kids volunteer at the camp CJ attends overnight.  If he could work at a camp for even a few weeks, it would be great.  I do know one thing.  As the population of people with special needs over the age of 22 increases, the need for something for them to do increases exponentially.  CJ for one WANTS a job.  After all, he does have experience working security. 

The Local Genius

keep-calm-genius-at-work-9 (1)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)