Autism Moves Out

Full Circle

March 6, 2020 / Kathleen Williams / 5 comments

Strap in, Ladies and Gentlemen…it’s going to be a heck of a ride.

In my very first post on this blog, I tentatively put out there my impossible dream of one day finding a house for CJ…somewhere he could live as independently as possible, and build a life that would last even after I’m gone.

April 2, 2013 – I posted my impossible dream.

February 29, 2020 – CJ moved into his new house.

Seven years. Seven years of mainstreaming and therapy and football and registering for the Selective Service, being prom king, becoming his own avatar, graduating from high school, getting a job, entering the Inspire day program, being interviewed on Fox News, and going to “college.” Seven years of carving out a path for my son without being sure where we were going.

Almost a year ago, I found out that Inspire might be setting up a group home. It wasn’t a sure thing, even though it looked promising. The county had a house that had been used as a group home prior, and was willing to lease it to Inspire at a small cost. The house was 2 miles away from our home. It was the right size, the right location, the right organization and the right timing.

Suddenly, I and several other parents has our laser sights set on that house.

We, along with the Inspire representatives, marched down to the county commission meeting, where it would be decided if we would receive the lease on the house. Oh, how we wanted that lease. We all got up and spoke. We explained. We laid it out. We held up photos. We teared up. I, who normally love public speaking, was shaking and streaming tears as we tried to make the commissioners see what a difference this house would make for our families.

The commission listened. When they could finally get a word in, they told us we were waaaay over selling ourselves – they had us on the docket to approve. YES! We got the lease and left the building triumphant.

The house had already been remodeled. It was nearly move-in ready. But the first step was to start an application list for people interested in living in the house. CJ was one of the first people on the list.

The end?

Not quite….

We applied for funding with the state. That application process takes weeks, at best. Meanwhile, the house was completely finished. There was an open house for the public. We picked out CJ’s room. And we’re waiting and waiting…on pins and needles for the state to answer us.

They finally answer.

Funding is denied.

It seems that CJ has done so well assimilating, that the state feels he really doesn’t qualify for needing an independent home. Because we’ve been successful in integrating him into the community, he doesn’t qualify to join the community.

We are devastated. The logic is terrible. We are now right back to looking down the barrel of a half life for CJ, trapped with his parents in a house until they age and die, and then the prospect of an institution in his middle age.

What’s it all been for? How could this even be possible?

There is an appeals process. But how do I even try, one more time, to fight the fight to stand up for my son? What would make a difference? My congressman? Members of the community who know CJ? His doctors? A lawyer? My coordinator suggested starting by resubmitting the paperwork with some additional information about how CJ cannot safely be alone. Fortunately, I know just the person…a person who knows CJ better than most and who is an expert in her academic field of special education. One magnificent letter from this amazing person combined with a reapplication, and we resubmitted.

Meanwhile, the house is filling up. The rooms get filled one by one. The room we picked out gets taken. And then there was one….one room left. Still no answer from the state. My level of anxiety was off the charts. I aged five years.

And then it came. The phone call we have been waiting 24 years for. The funding came through. He can move out. He can move in. And he got the last single room in the house.

In the end, the impossible was kind of ordinary. The room was already furnished so we just moved in clothes and a TV. It took longer to get the TV set up than to move everything else in. It took so long that CJ finally told us to “get out”. I politely asked if he would like me to remain and finish setting up the TV or get out. He graciously said, “You can do it”.

Thank you, son.

As we drove away, I expected waves of emotions and some sadness. Instead, I felt nothing but relief and happiness. He was perfectly happy there.

When he’s OK, I’m OK.

I get text updates and/or phone calls everyday from someone at the house. He is happy. He is eating what everyone else is eating. He sat perfectly still while they shaved him. He even got a haircut without me there.

I tried calling him yesterday, but he had a visitor. The baseball coach from the high school had come by to visit, so he couldn’t talk. He was too busy to talk to his mother.

Awesome!

He will yell “Hi!” and “I love you!” back at me, but he has much more interesting things to do.

And so this chapter comes to an end. And I know this is just the beginning of a new chapter. Oh, what a chapter it’s going to be!

Category: Amazed & Awed, Bound & Determined, CJ's House, Happy To Be Here /

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 /

Gimme Shelter

May 13, 2018 / Kathleen Williams / 5 comments

I’ve always said that I want the same things for CJ as I do for my daughter…to have a happy, well-adjusted transition from childhood to being an adult, to find something meaningful to do with their lives, and to find their own relationships in the community. In other words, to grow up, get a job and move out of my house. I’ve never confused motherhood with martyrhood.
And so far, CJ is 2.2 for 3. He’s grown up, he spends 8 weeks a year during the summer in assisted living without me and he’s got not just one job. He’s got two.He’s a true millennial.

Two days a week, he works in the cafeteria at his old high school. He loves it and they love him. He’ll probably still be working there after I’m
long gone. And he’s making $9.31 per hour! A respectable wage.
He also attends a sheltered workshop three days a week. The “sheltered” part is that it’s a place where persons with disabilities can go to be safe while learning job skills and to join in useful work. Work that has value, like stuffing envelopes, placing items into packages and other repetitive tasks that companies need done and are willing to pay for.

The “workshop” part is the part where they do the work and get paid. At first glance, it’s all felt very Victorian…very Charles Dickens. The people working at the workshop do get paid. They get paid sub-minimum wage. This kind of defeats the point of “minimum,” one could argue, and there are people out there who do. CJ started his job at fifty cents an hour. I had to sign a
paper stating that I understood he would be paid less than minimum wage. There are specific legal channels that organizations go through to be allowed to pay sub-minimum. I was upset about it and still am not happy with the whole idea. But….It was that or both CJ and me facing the prospect of five days a week at home together with nothing but endless TV and trips to Walmart and Aldi’s with mom. I did the math a few times and realized that I’d actually be subsidizing him working at the workshop facility. I also realized
I was willing to pay, for both our sakes. So off CJ went to the workshop. He absolutely loves it. He loves the people who work there and the other clients. He’s taking a class that practices interviewing skills, math skills and independent living skills. It all makes the part where I’m paying for him to work worth it.

And he’s riding the bus by himself to get there. He uses
tickets, which I began by carefully clipping together with a post-it note, stating which day and which trip each one is for. The first day, I carefully extracted that day’s tickets, and gave them to him, making absolutely sure he understood. The second day, he got out his own tickets, went outside an hour early to wait for the bus, and told me to “go away,” when I pointed this out.
When asked whether he liked riding the bus or being with me more, he firmly said, “The bus. It’s better than being with you.”
He couldn’t see me doing my happy dance behind my closed front door when I went back inside.

Three days a week, CJ is at the sheltered workshop. He recently had his first job review. He was evaluated by how quickly and efficiently he could complete at task compared to an
average, typical person. He then received a raise to $1.10 per hour. That’s a 120% salary increase. I don’t know about you, but I’ve never gotten that kind of job review in my life.

They make a big deal about paychecks at the workshop and he’s always so excited when he
gets one, reflecting his salary. He comes home and waves it around and tells us all how much
money he’s made. Mind you, he’s making $9.31 at the cafeteria, but he couldn’t care less. It’s that less-than- $20 per two weeks that’s got him stoked. His dad keeps telling CJ that he owes us all a meal at McDonalds.

I still don’t like the idea of people with disabilities being paid less for the same work that a typical adult could do for minimum wage. The work is worth a certain value, no matter who is doing it. It’s a complicated issue with some valid arguments on both sides, and there is a movement to stop sheltered workshops and other organizations from being allowed to pay less than minimum wage. But for right now, it’s making CJ very, very happy, which means, for the first time in a long time, I am feeling some happiness about his future as well. He loves his life. He has friends to talk to. In fact, when I got his initial evaluation with what they want him to learn, the only comment on the sheet was that he distracts others with his “chatter”. I couldn’t stop laughing.

I look back at where I was 9 months ago, and I’m astonished at how far we’ve come from that dark place where we were locked together, 24/7. Now, some days, I almost don’t know what to do with myself while CJ is out at work or at the mall and movies with friends.

It’s a problem I absolutely love to have.

Category: Amazed & Awed, Bound & Determined, Happy To Be Here /

New Normal Part 2—A JOB!

December 14, 2017 / Kathleen Williams / One comment

We’d been assigned a new job coach. Back in September, Valerie came into our lives. She reviewed everything we had tried, thought about it, and then asked one question.

“Why can’t CJ just work at Lake Howell?”

Lake Howell. The high school that had been his life for six years. Lake Howell, that he loves more than junk food, more than football, more than his mom.

Dumfounded silence.

Well, why not?

I have been thinking and thinking and praying so hard, reminding myself that no matter how big I dream for CJ, God’s plan for his life is already in place and so much bigger than anything I could ever imagine. But believing it…having faith in it…has been so hard sometimes. Hitting wall after wall, jumping through hoop after hoop, it’s been so hard to imagine a life for my son that includes purpose and most of all, joy.

And now, here it was. Or at least, it might be.

Valerie, who we now consider a genius, went to work. I tried not to get my hopes up.

Valerie, the Job Coach

It seems that the cafeterias at the schools are now outsourced. She had to make contact with the business that provides food service to the Seminole County school system. It took weeks and weeks.

CJ kept on trudging through job fairs and training. I learned that some corporations hold job fairs for people with special needs, with no intention of actually hiring anyone. It’s all for appearances. I drove him all over town. He kept getting dressed at 6 AM. I tried not to lose hope.

And then the phone rang. Valerie had made contact with the manager of the cafeteria at Lake Howell. The powers that be in the Seminole County school system had heard about CJ’s application to work in the school cafeteria, and they sent the message: “Make it happen.”

Valerie arranged an interview for CJ with the manager and area manager of the Lake Howell’s cafeteria. CJ dressed at 6 AM, and we went for the meeting at 9 AM. At 9:25, I got a phone call from Valerie saying she was back at the house.

CJ had the job!!!

Now, drug testing, background check and everything else that goes with a real job, so that CJ could start the following Monday!

I spent some time on my knees that day, my faith restored and my heart full.

CJ now works 2 hours, 2 days a week, doing lunch prep for the school he loves. If all goes well, that will expand to the limits of his earnings cut off. And it turns out, he’s a pro. He’s a dynamo in the kitchen. He can sort and process and arrange with the best of them. In fact, he’s raised the performance bar for the entire staff..And I am grateful beyond words. Welcome to the new new normal. Welcome home to Lake Howell High School!!

Category: Uncategorized /

New Normal

December 10, 2017 / Kathleen Williams / One comment

It’s been five months since my post. Five months. Long enough in real time. Light years in CJ time. We are a million light years from graduation, and nobody gave me a map from there to here. CJ graduated from high school in May. Seven years of high school and at the age of 21, CJ graduated. I have never been so terrified in my life. He walked out on the commencement stage to the call of “Christopher Williams.” Who? You could have heard a pin drop. Nobody knew who that was. Then the crowd saw CJ step out on the stage, and it was pandemonium. They clapped. They cheered. They jumped to their feet. “CJ! CJ! CJ!” He walked across the platform as a celebrity. He hugged everybody and everybody hugged him. He reveled in it.

And then we came home. I could feel the void looming. The emptiness of the days coming.

We shoved it back for bit while CJ went off to summer “college” at the ARC Jacksonville LIFE program. For 8 wonderful weeks, we all pretended that life was going on as usual. CJ loved his time there, growing, living in student apartments, and living the college life without classes.

And then it was over. Life as we’d known it for 22 years was over. And there was nothing waiting, no people, no activities, no bus, no purpose, no place in the world for CJ, except to sit in front of the TV and stare the next sixty years in the face.

School started again in August, and CJ didn’t go. Instead, he and I stayed at home with our new normal. Me being me, I like a good schedule. Sitting at home isn’t an option. So, CJ found himself out and about with his mom doing the shopping , going to the gym, and lunch with mom’s friends. Worst of all has been going to work with Mom. None of these things should ever happen to a 22 year old, but this was turning out to be CJ’s life.

Our options are limited. He can’t stay alone. He can’t live alone. He could go to a day program where he’d sit for hours doing arts and crafts. He could sit home and watch TV all day.

Not good enough. Not for me. Not for him. His world had shrunk to a shadow of what it was before. And the only one who could put it back together again was me.

He needed to get a job, I decided. How, I had no idea, but he needs a busy world full of typical people. Anything less is a waste.

But how?

Challenge #1: Money. Not too little. Too much. If CJ makes more than $85 per month, his SSI benefits are reduced fifty cents on the dollar. Yes. I need to find a job that makes almost no money. Because, if he has more than $2000 in his bank account, he loses his benefits entirely. Good luck, me!

Challenge #2: Working with a job agency. I discovered the Vocational Rehabilitation government program which helps people with disabilities prepare for job searches and find jobs. We were passed off to an independent contractor, who only gets paid if CJ finds a job. Great. So, CJ now has to learn how to present himself for a job interview.

He takes it very seriously. He has a “uniform” that consists of black pants and socks, black shoes and a green polo shirt. It doesn’t matter if the job interview is at 2 pm, CJ is up at 6 AM, dressed and ready to go. It all makes me want to cry.

He tries so hard, going to training sessions, watching videos on how to act and answer questions. I know it must seem so strange and bewildering to him, but he never stops trying to make the grade. Meanwhile, I make phone calls, send emails, go to meeting and arrange more interviews.

Could he stock shelves at the food pantry? Take in donations? Do laundry at the hospital? Volunteer at the high school? Anything. I’d take anything to keep him out of arts and crafts for the next forty years.

Weeks went by. Months.

And then I got the call….

Category: Bound & Determined, Dazed & Confused, Frustrated & Irritated, Scared to Death /

Destination Unknown

June 16, 2017 / Kathleen Williams / No comments

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

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

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

The Graduate

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

I don’t know.

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

A normal that’s not there any more.

Category: Bound & Determined /

Open Letter to Lake Howell High School

May 15, 2017 / Kathleen Williams / 2 comments

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

Category: Amazed & Awed, Happy To Be Here /

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 /

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