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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.

Sweet Summer Time?

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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.