Archive for Frustrated & Irritated

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.

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.

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?

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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. 

The Big Top

442815-Cartoon-Businesswoman-Standing-By-A-Flaming-Hoop-Poster-Art-Print

Johnny Cash and June Carter Cash laid down a music track in the 60’s that made rock and roll history when they recorded “Ring of Fire.”  And it wasn’t just any old fiery ring.  It was a “burnin’” ring of fire.  Seriously off putting.  A serious warning.

I always thought they were talking about the heartbreak of passionate love gone wrong, involving months of emotional recovery, and maybe a trip to the doctor for antibiotics.  Turns out, they were talking about dealing with the State of Florida and the Social Security Administration.

I tend to think of the government as a three-ring circus, as a matter of routine.  Except there’s, like, several thousand rings:  Congress, the legal system, HUD, DOT, the IRS, the DMV and of course, the SSA, to name a few.  At some point, all of us will be called upon to perform in one or more of these rings.  It’s called “doing one’s civic duty,” otherwise known as “avoiding prosecution.”

And how does one perform, once in the ring?  Why, by jumping through hoops, of course.  Big hoops, little hoops, hoops between two high stands, high hoops, low hoops.  And if it’s your misfortune to be called to interact with the DMV or the SSA…burning hoops.

Burnin’ rings of red tapey fire.

Of course, at the circus, it’s all cute little acts with cute little dogs (even cuter if they’re rescue dogs).  Once in a while, you get ponies or even lions and tigers (no one mentions if these are rescues, but they must be…only people run away to join the circus).  And big, small, tooth or claw, everyone is jumping through hoops.

Sometimes I feel like one of those animals.  Except not so cute.  And there’s no rescue in sight.

Ring 1:  We hire a lawyer to draw us pictures of all the hoops we’ll be jumping through to become Guardian Advocates and mapping out the order of the jumping.  We fill out all the documents.  We pay all the fees.  We dance.  We sing.  We wait.

Tah dah!  We are officially Guardian Advocates for CJ!  Nice jumping!

Ring 2:  The GA paperwork comes back.   We’ve passed.  We’re in the club.  Except now we’re told that we have to take a class.  A class.  Well…why not?  Why wouldn’t we have to take a class?  I mean, we’ve only been CJ’s parents for 18 years.  Of course, we didn’t need a class for that.  But now they require a class, so a class we’ll take!

It’s a hoop.  I jump.  I go on line.  I call.  I email.  I knock.  It turns out that in the entire central Florida area there are exactly two locations to take this class.  Okay…I can drive.  Oh but look! There are exactly two dates between us getting the paperwork and the deadline for the class.  If we do not take this class, we are in contempt of court.  Poof!  Burnin’ ring!

I am told by our attorney’s office and the people who conduct the classes that the courts are usually not really strict on it.   Yeah, I’m sure you’re very nice people, but…let’s just not take that chance.  Because if you look up “Poster Child” in the Burnin’ Ring Guide Book index, there’s a blank spot just waiting for my picture.   Just what I want to be, the one case that they decided to be strict with.  Kathleen Williams, “The Accidental Example.”

So…I sign us up.  Us.  Oh yes, my husband and I BOTH have to go.  And look!  If we go together, we can save $50.  Apparently, you can put a price on togetherness and it’s the price of your desire to be alone less fifty bucks.  I make arrangements for childcare.  Medium hoop.  My husband takes off work.  Little hoop masquerading as a big hoop. We jump.  We pose.  Man, look at how nicely those hoops are lined up!

Then I get the phone call.   The class date has been moved.  Poof!  Burnin’ ring!

The message on my phone states:  “The class has been moved to 10/31.  Don’t worry.  No costumes are required.”

Costumes???  What on earth does that have to do with anything?  Can you imagine the picture in my mind, given my circus idea??  I finally calm down and realize that day will be Halloween.  Obviously, my sense of humor is gone by now, scorched by the fiery hoop in front of me.  There is nothing I can do. It’s the government.   I call my husband. “Switch your day off!  Immediately!!!”  I call my friend.  “Can you switch everything you already switched around to help me with childcare??”  I call the government a few names, in private.    Then I break down.  I am DONE!

No, I’m not.

Ring 3:  Social Security Disability.   The Social Security Administration wants proof of CJ’s disability.  Our paperwork plus the doctor’s paperwork isn’t enough.  They want living, in-the-flesh, proof that Autism isn’t just a fancy word for defrauding the US government.  As a US tax payer wanting to know my tax dollars are being well managed, fair enough.  As a wife, mother and imminent Foundation founder with a calendar too fat to fit in my purse any more, give me a break!  But hey!  It’s a hoop!  Uncle Sam says jump, I say “how high?”

Hoops, hoops, hoops.  We fill out the paperwork.  I send in all the documents. We get a phone call to set up an interview.  That morning, I take CJ out of school.  As I roll to the appointment with CJ muttering and commenting continuously in the car seat next to me, clearly with no idea that our financial lives are basically on the line, I work myself into a quiet state.  Will he pass?  I mean, will he fail?  Will he pass by failing?  I mean…wait…and could they possibly evaluate CJ and determine that he is NOT disabled and tell me to ship him off to the Marines or something??  Poof!  Burnin’ ring, jumbo sized!

I am sure that I am going to have a full blown panic attack now.  But in to the SSA we go.  If anyone notices the smell of my well-singed imagination, they are too polite to mention it.  The funny thing is, the SSI people have all been nice.  I mean really nice.  Really, really nice and very, very helpful.  The people on the phone.  The person who did the interview.  I was shocked, frankly.  They all have such a horrible reputation for obstructing and denying.  But it was all fine.  I did not have a panic attack.  CJ was not shipped off to the Air Force.   Now what?  Now we wait.  Of course we do.  “They” will notify us of any additional information they need.  “They” may want us to have an independent evaluation.  OK.

Oh look!  Another hoop.

Back home, I ask around.  I’m told by everyone who has any experience with this process that once they get the doctor’s notes, they usually drop the request for the individual evaluation.  In fact, I can’t find one person I know that actually had to go through that.  We, however, are special.  We have to do it.  Our reputation as prodigious hoop jumpers must be getting around.

I get a letter in the mail on Wednesday stating “they” have scheduled an appointment for us with a doctor at 3 PM the next Tuesday, approximately 30-45 minutes from our house.  OK.  Here we go again.  Pull CJ out of school.  But what to do with Elizabeth?  She gets out of school at…you guessed it…3 PM.

OK, fine, I’ll jump.  I’ll pull her out of school early and bring her with us.  No…no, I won’t, because the paperwork specifically states that you may NOT bring any children with you to the appointment and you may only bring one other adult with you.  The longer I thought about that, the weirder it got.  I assume the prohibition on extra kids is to keep distractions out, but the extra adult?  Would that be to hold CJ down or to talk me out of my tree?  Maybe it’s to hold the now-flaming hoop of this appointment.

I call my friend, again.  Help!  She says she will pick up Elizabeth and keep her until we are done.  And when will we be done?  The paperwork says to plan on “several hours.”  I must admit to some grim laughter at that one.  If we start at 3 PM, we’ll be cutting into CJ’s dinner time by 4:30 or so.  Good luck with that one, Evaluator Doctor Person.  One flaming hoop, right back at ya.

I am thinking it may not take that long once they meet him.  If you’ve met CJ, you’ll understand.

I call the SSI office.  I speak to the woman who was nice, but a little short with me the last time.  She confirms that they have received all the paperwork from the doctor, yes, but it was not enough to make a decision.  Why not?  Well, she can’t even tell if the woman who wrote our letter is a doctor.  Um.  Yes.  Yes, she is.  It clearly states “MD.”  RIGHT ON THE LETTER WHICH WE ARE BOTH LOOKING AT RIGHT NOW.  But…whatever they want.  We will do it.  We will see their doctor.  Please.  Just stop flicking those Bics.

Ring 4:  I’m told CJ needs to bring his photo ID.  But he still doesn’t have one.  Why not?  Because it’s the DMV and why stick your hand in a meat grinder before you have to?  Now I have to.  I quick make an appointment with the DMV (by definition, a burnin’ ring of fire) for the next day, still undecided if he should go for the driver’s license or just get an ID card.  (Who knows?  Christmas is coming.  Maybe we should get him that truck after all. If they decide he’s not disabled, he should be able to drive, right?)

Off we go to get the ID.   It takes less than 25 minutes in and out the door. No fire, no burn, only minor jumping.  The best part of all is when they show us CJ’s photo, and he announces loudly to the entire room, “I love it!”  (It only took 2 takes.  THAT might be a record.)  I look at the photo guy who’s smiling.   “I’ll bet you don’t hear that often,” I say.   Once again, CJ is making them all smile.

Ring 5:  Next stop…the SSI doctor to determine if he can work and support himself.  The SSI worker said the evaluation might take “several hours.”  I figure about five minutes should do it.

Send in the clowns.

 

Respite

respite ringRESPITE – [res-pit] – noun

1. a delay or cessation for a time, especially of anything distressing or trying; an interval of

relief: to toil without respite.

2. temporary suspension of the execution of a person condemned

to death; reprieve.

3. to relieve temporarily, especially from anything distressing or trying; give an

interval of relief from.

4. to grant delay in the carrying out of (a punishment, obligation, etc.).

I am going with #3.  Autism doesn’t go on a courtesy delay, or cease for a bit now and then.  It requires 24 hour, round the clock duty.  It requires somebody (usually me) to be in the general vicinity of CJ day and night.

I won’t bother going into the various studies and opinions.  If you want to explore whether or not it’s true that mothers of adolescents or adults with autism have stress levels equal to soldiers in combat zones, be my guest.  I can’t say what my stress hormone levels are, or what’s high and what’s low in my body or bloodstream.  All I know is that sometimes, it’s sort of okay, and sometimes, it feels relentless and exhausting and sad and awful…really awful.

We are blessed, and I do mean blessed, with state-paid respite services under the Medicaid Waiver program.  This means that I can call an agency and request to have someone come to our home to stay with CJ so that I and/or my family can get out of the house and have a break.  Some of the people who come are amazing.  Once, we had a wonderful woman from the Bahamas who was a grandmother.  She was kind, willing and interesting to talk to.  Unfortunately, she had a full-time job and limited availability.  Eventually, she quit doing respite care.  It’s an ongoing problem.  Respite workers are trying to help…trying to provide a service.  But they get paid very low wages and rarely have enough hours.  They can’t make a living and they end up quitting.

When it comes to time, they are often unreliable.  Because of the low pay and limited hours, you can pretty much assume that most respite care workers have exhausted their other work options before they arrive at your front door.  If they arrive at your front door.  Among people who use respite care, it’s a well-known fact that you can’t generally count on them to be where they say they’ll be, on time.  Sometimes you get lucky.  Sometimes, you are left sitting  on the sofa as the sun goes down with tickets to a movie that started a half hour ago.

Sometimes, it is just not worth it to go through the process.  I have to weigh the time and frustration costs.  How much time and energy is it going to take out of me to get someone for a few hours on a Saturday afternoon so I can run errands?  Would it just be easier to just take CJ with me?  Would it be easier to just go at another time on another day?  How big a pain is CJ going to be if I take him with me?  Some days, he’s fine to go.  Some days, it’s a social and psychological nightmare.  Trust me, if he doesn’t want to do something, he can ruin your time.  You have to see it to believe it.  There is just something about a 6 foot tall, full grown young man pitching a fit in the middle of a store yelling, “Mom!  Mom!  I want to go!  Let’s go!”  For some reason, that really draws attention to you.  Those days can be really REALLY frustrating.

On the other hand, calling for respite, making precise plans, speaking with the agency and then directly with the respite worker, giving directions, and getting all one’s ducks lined up in a row, only to wind up watching the clock spin around as the hours of the afternoon disappear with no respite worker in sight…well, that can be several kinds of frustrating too.

So…I can commit to one kind of frustration, pretty much guaranteed, but 100% sure that I’ll have my groceries at the end, or I can take the longer shot, cross my fingers and hope that I’ll have a few hours to myself to recalibrate and do the hunting and gathering in peace, but possibly end up frustrated, trying not to be angry, trying to keep my perspective and understanding…and still needing to drag a reluctant CJ along for groceries at the end of it all.

If autism is a gambling casino, respite care is the roulette wheel.

It has been a great summer.  We were able to go to the beach with family and then managed to tag along with friends for another week at the beach.  (It is great to have friends who just let you and your craziness come along with them!).  The only really tough part has been getting a “respite”.  See # 3 above.  It’s all been fun and it’s been MUCH appreciated support from friends and family…but it hasn’t been a break.

I decided that desperate times call for desperate measures.  I got someone to come last weekend.  I had her come Friday, Saturday and Sunday evenings.  I had no plans.  My husband was working into the evening.  My daughter was at a friend’s for the weekend.  My friends were all out of town or not available.  No matter.  Friday, I ended up wandering around Target for several hours and then meeting my husband for dinner.  Saturday, I wandered around the mall for more than 2 hours.  Sunday, we took a friend to dinner for her birthday and spent more than 3 hours at the restaurant just talking.

It was all so ordinary.  It was all so normal.

I realized something very important.  Even when I think I’m doing okay, I really DO need respite.  I need some time alone.  I need some time away.  AWAY.  It is OK to need time.  I often think of what people say…you are no good to anyone else if you don’t take care of yourself.  On planes, they say that you should put your own oxygen mask on BEFORE helping anyone else.  Parents, and women especially, tend to take care of everyone else before themselves.  I (and many people I know) need to remember that we are better people, parents, spouses and friends, if we take care of ourself.

For me, the mom of an adult son with autism, a walk around the mall alone is a mask full of oxygen.

 

B-Day is D-Day

CJ's cakeHappy Birthday, CJ!

Well…here we are. He is officially 18…an adult.  We are officially NOT in charge.

There were no casualties at the party. The cake was awesome and the friends were even better!

Now, I am stalking the attorney.  I emailed the office 7/30 for an update.  Tick Tick Tick Tick.  Remember that while we can file the paperwork for guardianship with the court, the court can’t act on it until CJ turns 18.  But the second he turns 18, he’s a legal adult and a free agent until the judge gets around to saying otherwise.  If he gets into medical trouble or legal trouble before then, he’ll be treated as an adult able to consent to care or otherwise.
This scenario gives me nightmares at the moment.
I was told that everything was filed with the county and we were waiting for a response from them.  We should know something “the next week.”  I managed to wait until the end of last week (it was heroic) and emailed again.  Again…the case is filed and will be handled by the attorney the beginning of next week.
A startling thought occurred to me:  could it be that this is all routine for them and not the center of this known universe and any others that might be next door to ours?  Could it be that they feel a legal play by play is unnecessary?  When I agreed to a retainer in return for a legal perspective, maybe that wasn’t an unspoken agreement to make my perspective their own.  Did I get it backwards??
Well…it is NOT routine for me and I can’t sleep at night.  My son is legally naked, so to speak, and it bothers me.  A lot.
I actually fell asleep while I was talking to a friend on the phone yesterday.
Oh fantastic.  Apparently, the judges are all out at a conference.  Ugh.

Guardian Angel?

Autism Mama Bear Have you ever had the feeling that your head was going to explode?  Remember that feeling in school when so much information was being crammed in at such a fast rate and you never had enough time to process it all?  It all begins so innocently.  You have a question.  You ask the question.  You get an answer.  While processing the answer, it creates the need to ask another question, and then to evaluate and process more information as things grow transform and then more questions abound.  Before you know it, you’re eating the cupcakes that were supposed to go in your daughter’s lunch tomorrow and re-watching reruns of Downton Abbey to make the noise in your head just stop.

Today, I asked a question.  Today it all began. Today, I met with an attorney.

There was nothing I didn’t already know.  I like to answer my own questions beforehand, and then compare them to the answers I get from everyone else.  It’s what I do.  If I do it right, there are no surprises.  No big announcements.  It is what it is.  And I get to be right (I love that).

So there it all was…the next steps for us in relation to CJ.  It was all laid out in black and white.  A process.  Specific steps.  The good part — it was all laid out in black and white and it was all very clear.  The bad part — it was all laid out in black and white and all just too real.

CJ is going to turn 18.  And he can’t just do that with a cake and candles and the keys to a new car.  CJ can’t be 18 without us.  The Joan Crawford Institute for the Prevention of Dreadful Parenting says so.  I know.  I checked online.

CJ needs a Guardian.  And apparently, it can’t be us.  And it can’t be just any Guardian.  It has to be a Guardian Advocate.  Okay.

Now…I have a question.  Remember the exploding head?

Who is going to succeed us a Guardian Advocate?  Who is going to do what?  What on earth is the difference between a Guardian Advocate and a Guardian?  The attorney says to me “Guardian Advocate.  ‘GA.’  Think Guardian Angel.”  Helpful.  My normal snappy come back failed me in this moment.  My brain really must have been full at the moment because I just couldn’t come up with anything obnoxious to go with GA. And I really needed to.  (I am guessing that was God’s grace that I didn’t,  so that this guy didn’t think I was a complete lunatic, because I really really need him to confirm what I already know…and I’m still working on my own answer, BTW…I’ll let you know.)

So paperwork and some more paperwork.  Cost is just not even an issue here.  Get it done and get it done RIGHT!  Mistakes can cost you at this point.  (Scary)  Even worse, mistakes can harm your child. (See JCI for Dreadful Parenting, above)  Back to the whole Guardian Angel thing.  Someone else is going to do this instead of me??  You know how they tell you you shouldn’t mess with a Mama Bear….well, don’t even think about messing with a mother of a special needs child!  (There are always snarky postcard things on Facebook about special needs moms…their outlook and attitudes.  They never, ever fail to crack me up, because they are so true.)

The attorney made an interesting comment to me.  “You can read a book about being a parent of an autistic child, but there is no way you will ever understand unless you are one.”  That is true about so many, many things.  There are tons of jokes, funny stories, sad stories, tragic stories, information and events that will just break your heart.  I always say that I can laugh or I can cry.  Sometimes, I just scream.

But today, I exploded.

Tangled Up In Knots

Autism tying shoesFor years we have tried to teach CJ to tie his own shoes.  Therapists have “protocols” with step by step instructions to learn almost anything.  I had no idea that there were so many steps to everyday activities that I do by rote.  I don’t even remember learning most of these things.  I am fairly sure after watching my daughter that you don’t ever “learn” per se, you just know when you are the right age.

Tying someone else’s shoes for 17 years is tiring.  It was nice when my daughter learned to tie shoes.  I could make her tie his shoes.  She is much closer to the ground, after all.  I said in passing something about him not being able to tie shoes.  One of the women asked why I didn’t get him the elastic laces that triathletes wear.  WHAT!!!???!!???  Apparently, athletes use these elastic laces that have to be purchased at a sporting goods store.  They are elastic cording with plastic clips.  The clips move to hold the laces at the appropriate tension for the wearer.  When I went on line, it said “perfect for the elderly and persons with special needs”.  OK.  Why does no one I know with special needs kids know about this, then????

I bought them and put them on his shoes.  He can now put on his own shoes and they stay on.  OMG!  I never knew that the quality of my life would improve with the purchase of a pair of shoe laces.