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Sum..Sum..Summertime

May 26, 2019 / Kathleen Williams / No comments

Sum…sum…summertime!

It’s been a while since I’ve posted… a long while. And the reason is that nothing much has been happening. CJ has settled into a nice routine of working and attending his programs. He rides the bus several times a week and has as much independence as I can manage. He’s played baseball. He’s attended dances. He’s volunteered with the Blake Bortles Foundation. He spent time with family and friends. He’s out and about, and has begun to live the life I’ve carefully assembled for him. We have good days and bad days like everyone else. Mostly, things are good.

And now it’s summer again. There was a time when I dreaded summer. I would watch the calendar click away the days as the end of school drew closer and closer. Summer meant no school, no schedule, no bus, no breaks. Summer meant togetherness…the hell of 24/7 togetherness.

Summer has no schedule. And there is nothing worse for CJ (and for me) than no schedule.

Now, however, things are different. Now…we have the ARC.

We all look at the calendar as the spring days pass by with anticipation. Summer now means “college.” “College” means the Arc Jacksonville’s Summer LIFE program. “College” is a beautiful eight weeks of freedom – freedom for CJ to live the life of a college student without the responsibility of classes. He moves out of the house for two months. While he’s away, he learns life skills and how to be more independent in ways that are different from what I can teach him. He cooks, cleans, does his own laundry and takes his medication himself. And most importantly, he gets to swim. Every year, he proves something to us and to himself. He proves he can do more…more than any of us would have ever thought possible. He grows more every year he goes.

This will be his fourth year. The first year, we crept uneasily around the house while he was gone and were never too far from the phone. The next year, we went to the beach for a few days and enjoyed the quiet. Last year, we booked a cruise and left the country.

This year, we have another trip planned.

Eight weeks will fly by. Eight weeks where we settle into a world of What Could Be. Eight weeks where the world balances and we all feel a new kind of freedom. Eight weeks of summer.

Eight weeks is nothing.

Now, from the moment CJ comes home, he looks forward to going back. For months, he will talk about how much fun he had and everyone who was there. He will ask and ask and ask about moving out and going back. How do I look at the calendar and explain the 10 months until “next time?” How do we go back to just getting by, waiting for the life he wants to start again?

It’s hard sometimes, knowing that the world I’ve been able to put together isn’t enough for him. And yet, it’s wonderful that he feels that way…that he feels the potential for more.

I have to find that more. For both of us.

We are still looking for a place that is a good fit for him so he can move out. And finally, there are more and more opportunities coming up. So far, we haven’t found a match. But I know that the right place with come along at the right time. It just has to.

Until then, we have the summer!

Category: Arc Jacksonville, Happy To Be Here /

The Honeymoon is Over

November 7, 2018 / Kathleen Williams / No comments

Today, CJ climbed onto the bus which I have carefully arranged, and went off to his regularly scheduled job.

Today, I climbed into my car and went off to my regularly scheduled job at UCF as well.

Life, Regularly Scheduled. Life, as it’s going to be from now until….when?

Three years ago, CJ left on his first big adventure with the ARC of Jacksonville. He was away from home for four loooong weeks. We were anxious…nervous wrecks, basically. Was he going to be able to do this? Would all his carefully taught life skills hold solid, or would he be asked to leave the program? He lost his state issued ID. He dropped his phone in the pool. He had the time of his life. And we very, very carefully, considered the possibility of life beyond CJ for the first time in two decades.

Two years ago, CJ left again for another big adventure with the ARC. This time, it was 8 weeks. We were much less nervous. He had shown us that he could thrive without us, and we spent some time at a condo on the beach, chewing on that idea. It was better than we expected and our anxiety levels went down nicely. Meanwhile, at the six week mark, CJ’s anxiety levels started going up. When was he coming home? How much longer? He was fine to stay but we wondered how far he could go, out on his own, before he’d need to return to the nest.

However…we had tasted a bit of a new kind of freedom. Life with CJ is an astonishing thing. Life without CJ is a revelation.

Last summer, CJ went away for another 8 weeks.

We booked a cruise and left the country.

Yes, we gave it some thought, and decided to visit Fidel Castro and a bunch of ’57 Chevys in Cuba while CJ partied on at the ARC.

Times have changed.

This time, like any young adult away from home, CJ had no desire to talk to his parents. In fact, he repeatedly hung up on his mom. He lost his ID again, but his reports home were very uneventful…downright boring. No blowing food up in the microwave. No eating everyone else’s food. No swimming with his phone. No, no. While we were away, his buddy Blake Bortles came to visit the ARC for the day, and my son ended up featured in Sports Illustrated Online.

Clearly, with the right support, he can function without us just fine.

But….

Eight weeks passed. CJ came home on a Saturday. Monday morning, he was on a bus back to his program and to his job. There was no transition time, no chance to shift gears. He was back…as if the ARC had never happened.

Except that it had. He’d had a taste of freedom. And so had I. Our awareness has changed and we are both forever different.

I did something I never would have done before. My son was home…and I got on a plane and left for a vacation in Hawaii. Me, who had, somewhere in the past 20 years, forgotten what it was like to go first…I got on a plane and I flew, guilt free and breathing in new possibilities.

I realized that CJ would be fine in the right place. He’d be happy living his life, with his friends, living his own life, during the week. We would visit on the weekends, take him to church and out to Sunday dinner, and then we’d all return to our lives. He’d be fine. And so would we.

We cruised to Cuba, and I could see it all. It was possible. CJ had it in him. So did we.

And then we came back. And I realized that there’s no program in place, no place for CJ to go. I realized that it’s not going to happen. There’s nothing in Orlando that meets the basic criteria that I have created for an acceptable place for CJ. No light at the end of the tunnel. No options. Nothing.

I got depressed. I think CJ got a bit depressed too. He was originally making $1.10 an hour at his job, after his astonishing raise of 120%. But I got a letter saying his salary had been slashed to $0.85 an hour…his productivity rate had plummeted. According to CJ, “They told me to hush.” I asked if he was just running his mouth and distracting other people and he said, “yes”.

Yeah. I get it. I really do.

For both of us, I think our hearts are not in it any more. I know this is true because I screwed up the bus schedule…twice. Me, who never, ever, screws up anything related to CJ. I’ve let the reins slip in my hands just a bit. But that bit is all the difference in the world.

For the rest of my life, I’m going to be calling for busses, getting assessment letters and telling CJ why he can’t go and live the life that he’s show us all he’s ready to live. I’m going to be carefully choosing my work options, limiting my options to places that will tolerate CJ in the office on the days where arrangements fall through, where things can adapt when things go wrong in our carefully structured world.

And I’m grieving this now.

I still have a 2-5 year goal of finding somewhere for him to go, where he can be free to “go to college” in a full time basis…his endless summer that will see him through to the end. But it mean we’ll probably have to move…leave our friends, our lives.

And I’m starting to grieve that too.

This summer, CJ and I both grew up, and we can’t go back.

The 22 year honeymoon is over.

Category: Arc Jacksonville, Dazed & Confused, Frustrated & Irritated, Just Plain Sad /

Time is Ticking

December 4, 2016 / Kathleen Williams / One comment

Time 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.

Category: Arc Jacksonville, Frustrated & Irritated, Scared to Death /

College Summer Experience

August 27, 2016 / Kathleen Williams / One comment

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!!!!

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.

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.

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.

Category: Amazed & Awed, Arc Jacksonville, Happy To Be Here /