Archive for Bound & Determined

How to Get Into College

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

I have many friends with kids near CJ’s age. They are in college, applying to college or even just graduated. I have spent many hours talking about requirements, distances from home and especially, money. I have spent even more hours talking to moms and dads of special needs kids about our options. There aren’t many. The State of FL alone has 12 state colleges, 28 community colleges and 33 private colleges. What are the options for young adults that can’t go to a typical college setting?  There really aren’t many. There is a big difference between going to college as you and I would, going to a trade school or getting a job and what it would look like for CJ.

Homes and Communities

But first things first.  First, we need to find a place that CJ can live as independently as possible as HE can live. How independent does he have to be? What does he need to master before he can move in?

There are residential facilities more similar to a retirement community where there is some level of supervision.  These are more like somewhere that you would expect to visit your grandparents. They can have a home or apartment with room mates or even their own place.  They can offer meals and recreational activities or be completely independent.  They will often offer transportation.  The idea is to live as independently as possible.

Right now, I am focusing on two prospects. Both require CJ to be more independent that he is now and both are still in development. I have not toured either of the facilities. I do have a target January 2018.

I have a friend whose son moved to a “Group Home” under unpleasant circumstances for the safety of all involved. It was not what she had planned. She had dreamed and planned of a home or community atmosphere where he could live a full life. Things did not work out that way. Currently, in the State of Florida, the only way you move to a group home is “Life or Death” situations. I have actually said those words to the “powers that be” and been told “yes.” Yes? Seriously? That’s the best we can do? Basically, the person must be a danger to themselves or others. There must be no one able to care for them. (unwilling does not count) You can’t drop these kids off at a fire station. I had one friend ask seriously in desperation what would happen if she left her son at a hospital and she was told they would “pursue her for abandonment”.

My friend’s son was actually doing well. They had talked of him “going to college” for years. His older siblings had gone to college and moved out. It was what you did in their family. He was just the last to do it. He had the care he needed and was doing well. The interesting thing is that everyone I have talked to whose child has moved out has said that they are doing better outside the home as they are able to have their needs met. The families are happier as they are able to reconnect their marriages, friendships and families. They almost all, however, felt guilty. I had one mom tell me the house wasn’t up to her standards of cleanliness. All of a sudden it hit me. It’s not up to your standards. It’s not going to be. It’s not supposed to be. I looked at her and asked what she thought his living conditions would have been like in a dorm or worse, a frat house. Have any of you been in a frat house?

So, what will it look like for CJ? That is what keeps me up at night.

Tours

I took CJ with me when a group went to look at a property for a possible community. It had been a sort of boys camp prior. It was abandoned, but had buildings on it. He was VERY irritated with me that he was there. I finally asked if he would like to go to move there and live with his friends. It looked like a camp and he loves camp. I just wanted him to shut up. As he continued to run his mouth, I started to have fantasies about him living at a long term “camp” where he was safe and having a great time, but NOT making me crazy. I told him he could “Go to College”. “Oh, OK. That would be good.” Nothing came of any of it as the property was not usable. I forgot about it.

When school was starting back up in the fall we kept running into kids who were getting ready to start college or were staying local. One day we were driving and he asked out of the blue, “When am I going to ‘college’?” I was caught off guard. I would have just answered, “you aren’t going to college”, but there was something to this question. He stated it very clearly. He wanted to know. I probed further. “What college?” CJ-“That place where you took me with the buildings”. Me-???? Light bulb moment. “College”. “COLLEGE!”

He wants to go to “college.” He wants to move out. He wants to live with his friends. He wants his own life. He is 20 years old. What did you want when you were 20? I was at college and dating my now husband. I was certainly NOT living at home with my mom. You’re welcome Mom!!!
Now………How to make it happen?

Colleges

There are programs at colleges for persons with intellectual and developmental disabilities.

UCF has a program for adults with Intellectual and Developmental Disabilities http://ies.sdes.ucf.edu/

UNF has a program http://www.arcjacksonville.org/college-experience-oct/

Marino Campus in Fort Lauderdale has another program http://marinocampus.org/

I have met people involved in all these programs. They are all amazing. They all give individuals with intellectual or developmental disabilities a chance to further their education. These programs are not designed to get a regular degree.  Some individuals with special needs can attend colleges with or without accommodations and can complete degrees. There are persons with all different disabilities including autism with degrees even Ph.D.’s. These programs are not for those people.  These programs are designed to be more of an assistance as a transition.   They all give individuals a chance to move out and be with their peers. They are all “college” programs. They live in an environment where they are more like a dorm situation with organized activities and classes away from home and yet not completely independent.  I have not heard one negative thing about any of them except the normal monetary concern about college. Here’s the problem for me. It will cost as much to send CJ to “college” as my daughter and we can’t do that. We certainly can’t do it indefinitely. I know people who were on a 5 year plan. If you get a master’s, you might be able to add two more years. Even with a Ph.D., you better be done in less than ten years. Ph.D. CJ is not likely and I need a permanent solution.

There are summer programs for adults like CJ.  There is one offered through an assisted living facility in Jacksonville that is 4 weeks. It is on a college campus and is a sort of cross over that lets individuals try the program to see if they would like to attend the college or would like to move into the residential location. I look into the details and I was crushed. He has to be able to take his own medication. He has never taken his own meds, and I have always know he never would. We are out. I cried. It just feels like every time we think a door is opening, it feels like someone slams it in our faces.

Changes

BUT.  Yes, but. Over the holidays he started shaving himself with a razor. A real razor. I have no idea why he decided to. He nicked himself pretty good. My first reaction was to panic and yell at him and tell him he shouldn’t be doing that, etc. Some how I managed to think before I spoke. (The magnitude of that is more than you know.) I realized that I have hacked my legs up with a razor more than once. I mention to a few men what happened and every one of them shrugs and tells me that he still has days when he cuts his face up.Razor

 

 

 

Maybe I needed to reevaluate this whole situation. Several different people told me about medications options. You can order medications in packets by doses, so instead of bottles of medications, you get packets with the right combination of medications for the time of day. Some facilities will actually hand the medications to residents. They just have to actually take them independently.

Maybe I jumped the gun here. I call to find out what the facility will and won’t do. I spoke with a very professional young woman who put me on hold twice to get clarification. Answer: They can’t physically do anything. They can’t hand him anything. They can’t tell him which packet to take or not take. He must do everything independently. I had to hang up. I was so disappointed. Now, I was really crushed. There was nothing more I can do. He does have limitations, no matter what I want to tell myself or what others want to tell me. He can’t do this.

I emailed a friend as I couldn’t even talk. She emailed right back. She wasn’t buying it. CJ has surprised us again and again. She said we just need time and a plan. There are all sorts of aids. She sent me several links for ways to package medication for seniors and others.  I started to feel some hope as I started looking. You can make your own blister packs with the dosages. They even sell machines that lock that will dispense the correct dosage on the correct day at the correct time. It will even sound an alarm and/or flash a light. Who knew?

Hope crept back in. I started to get excited again. (tentatively) How long did we have? A Plan. A Plan. All I need is a plan. I can conquer the world with the right plan.

I order the simplest option, small zip lock bags with a write on label. I fill them with each dose and use a different color marker for AM, 3 PM and Bedtime. I wrote in the days and separate them in a plastic container.

I had CJ come in and started with giving him the packets. He got irritated, and I got worried. Maybe he can’t do this. And then tells me it is “not his job”. Now, I’m irritated….and hopeful once again. Step up, Boy!

As I watched, he took the crusher, crushed the pills and took the medicine.

?????

It’s that easy? All this time and worry and it’s that easy?

Well…..yes and no. We still have some fine tuning to do. He got upset with me one day because there was no Tuesday. There was an extra Thursday packet, but no Tuesday packet. He simply couldn’t take Thursday on Tuesday.

I can work with this.

I made a chart that is color coded to match the markers on the bags. I laminated it and got a green (of course) dry erase marker to check off each dose. I do love a good chart and laminator.

He tells me regularly that it is “not my job”. I tell him each time that he has to do it if he wants to go to college. Do you want to go to college? Yes. Then do your own medicine. Oh. That’s different.

He still needs to be prompted. He still isn’t opening the one capsule he needs to I still keep hoping that he will just wake up one day and swallow his pills. That would make the biggest difference. He routinely swallows huge wads of food. When it comes to pills, however, he is like the dog that coughs up the pill no matter what.

I can still work with this.

The biggest lesson here is that I need to remember that no one knows what he can and can’t do. We can only move forward and try everything. I have to continue to remind myself that it doesn’t have to look like it looked for me or will look for my daughter. We can’t keep underestimating CJ.  His future holds amazing possibilities and the options are growing.

Sweet Summer Time?

The-summer-2015-is-coming

Sweet Summertime

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

Elizabeth

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

CJ

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

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

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

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

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

How do we get here?

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

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

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

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

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

The future

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

Freak Out

Laminator - Autism Moves OutIt’s been a couple of months since I posted.  Feels like about three weeks.

CJ had his fifteen minutes of fame and got quite used to his new normal of The Entire World Has Gone Green Just For Me.  A month after all the excitement, the “winning” touchdown, the TV cameras, and people wearing green body paint in the bleachers…well…all I can say is, thank goodness Christmas came right up on the backside of it all, because nothing less than Christmas could keep CJ’s enthusiasm for his own life up as high as it’s been.

I love everything about Christmas.  Love the decorating.  Love the baking.  Love the making gifts, the holiday shows, the lights.  CJ loves parts of it.  It’s overwhelming and overstimulating…but he absolutely demands we produce a Christmas tree and outside lights.  It’s mandatory.  He also insists on knowing when everyone one else is going to decorate their trees and houses, and waits impatiently for them to get to it.  Of course, just as soon as we get everything up and lit, he starts wanting to know when we’re going to take it all down. It’s a fine line, timing it right so he doesn’t build up too much of a head of anxiety on either side.

He also loves giving Christmas gifts to everyone.  As he’s never been voluntarily holiday shopping in his life, this means he is actually volunteering and offering step up for anything that needs to be made or done.

The fact that he is actually volunteering me to bake and knit and craft is completely beside his point.  He’s one jingle hat short of Santa CJ and I am his elf.  And now that his social life and contact list have blown up in the wake of all football excitement, my normal short list of teachers and neighbors turned into 30 containers of Christmas cookies plus extra for the coaches’ office.

I’m gonna need a bigger oven.

Along with the tinsel and lights and cookies came a phone call from my doctor.  I’ve had a place on my liver for about a year now that was concerning, and after a new round of internal close-ups (bad lighting, no makeup), while he thought it was benign, he decided it had to come out.

Well.  Merry Christmas to me.

At that point, everything became a blur.  Anyone who knows me knows that I am Douglas MacArthur, Genghis Khan and Judge Judy, rolled into one organizing, do-not-get-in-my-way-when-I’m-on-a-mission-or-I-will-roll-over-you-with-my-minivan Commander In Chief.  Suddenly, December 25 was just a stopping point on the way to mid-January, when I would have to actually set foot inside a hospital for the first surgery of my life.

Just for some perspective, I would rather give CJ a haircut and shave every day for the rest of my life than spend two hours getting hooked up and prepped for…anything.

So while my oven was turning out dozens of cookies, I began making lists.  Lots and lots of lists.  It gives me the illusion of actually having control.  Especially when I laminate the lists and I can see at least one over every major appliance and from any angle where I stand inside the house.  With lists, even if I didn’t make it through the surgery, I would still be there, telling everyone where to go and what to do and how to do it.

Meanwhile, Life, with a Capital L, kept on coming.

CJ got a letter, a cap and a signed ball from a Kansas City Chiefs player (that was a jaw dropper, and one of the nicest letters I’ve ever read).  Then he was awarded his football letter along with the rest of the team (didn’t see that one coming and another jaw dropper).  Then, and I am not making this up in a post operative fantasy, CJ was voted MVP by the entire team.  After I picked my jaw up off the floor yet again, I let the coach know I was concerned that a very deserving player on the team had missed out on the honor and I wasn’t quite sure what to do.  The coach, a man after my own organized heart, did a recount and realized that the second place player had voted for CJ too.  The whole team had decided.

I suppose it’s true that he did play in the only game they won this year.  We’ll take it.

CJ now moves the MVP trophy from his bed to his table in the living room to the floor in his bedroom, depending on wherever he is at the moment.  He holds it while watching “his” press coverage saved on our DVR.  He would sleep with it if he could figure out how.

I took Elizabeth with me to visit my sister in North Carolina.  I had seen snow once, but I never got to see it actually fall before.  My husband stayed home in Florida with CJ and we actually got to fly instead of road tripping with CJ.  I love my son, but it was crazy how unstressed I was.  There was a six hour flight delay and three hours sitting in the airport, and I just kept smiling and smiling until nobody wanted the seat next to me.

OH!  I forgot to mention that CJ had his first date!!  He took his Best Buddy to Steak N Shake.  Of course, this means that I had a first date too, as I went along.  I discretely sat at another table, far enough away not to cramp his CJ style, but near enough to hear now and then.  And take a few photos.  Poor CJ.

Mind you, his Buddy is drop dead gorgeous.  She won a scholarship pageant, plays basketball and has interviewed with Harvard and Yale.  She’s is bilingual, and is even more beautiful in the inside than the outside.  She told me later that CJ talked to her that night more than he ever has.  She told me that he told her all about how Elizabeth and I spent New Years at the beach.

Beach.  Snow.  Close enough.

Aim high, CJ.  Aim high.

Mercifully, school started back up, which gave me the time I so desperately needed to start really freaking about over my upcoming surgery.  Even ignoring my fear and loathing of hospitals and needles of any kind, there was still the fact that someone was going to carve on me, and me and a piece of my liver were going to part company.  And somehow, some way, the world was going to have to struggle on without me for at least a week.

This is exactly what OCD freak mode is for.

I typed.  I washed.  I shopped.  I scheduled.  I worked up directions for the oven, the washer, how to clean the floors, work the locks on the fridge and pantry, how to clean the bathrooms, use the microwave, use the internet and shop for food.  I stocked up on chicken nuggets and pretzels.  I emailed teachers.  I printed labels.  I made an entire notebook, and if it wasn’t in the notebook, it was laminated.

I was in my element…in my glory.  I eventually realized what I was doing was what is second nature to me now:  making sure that everything in CJ’s life was as close to unchanged and normal as possible.  If he knows what to expect and what to do, then he can deal, which means everyone else can deal too.  Surgery, smurgery.  I was preparing to delegate my role as Supreme Commander of the life of an person with autism, and Eisenhower on D-Day couldn’t have done any better.

And, thankfully, everything turned out fine.  All results came back negative, no one starved and the house didn’t burn down.  We couldn’t have asked for better, kinder support from friends, family, neighbors and our church.  I have had more offers of help than I could ever accept.  I have to admit, it’s nice to be needed.  But it’s also good to know that my family can step up when they need to.

Turns out, all this is cramping CJ’s style though.  He needs me to get back to normal as soon as possible so he can go on a second date.

Lockdown

red bike lockYes, Justine.  There really are locks.

As my friend sat, staring at me a bit blankly across the table at lunch today, I had another of those little realizations that pepper your world when autism comes to stay at your place.  Yeah, we all know that your normal is not my normal.  That’s a given, and I get that I’m the one that’s fallen down the rabbit hole.  After a while, things just seem normal to me that would send most people looking for the “Wake Up!” bottle.  But I also realized that sharing rooms with autism has made me literal.  Very, very literal.

I had made a comment about the locks on my cabinets.  Justine looked astonished.  She said, “You mean you have actual locks…on your cabinets?”

Uh, yeah.  What I said.  Now, Justine has known us since before CJ was born.  She is a regular reader of this blog.  She’s as “in” in terms of understanding as anyone else in my circle.  But all this time, when she heard me say “I locked the food up,” she thought I meant that I put it away.  You know.  On the shelf.  In the pantry.  Like a normal person.

“No,” said I.  “I have bike locks on the cabinet and refrigerator.”

What was really weird was that at the same time I was acknowledging inside my head that having locks like that was strange, I was also thinking of several other people I could name off the top of my head that I know who also have locks at their houses.

The rabbit hole can hold a surprisingly large amount of people.

All this, of course, leads to the next question.

Why??

Well…

One of the many, many effects of autism is that it can screw with a person’s appetite and digestion.  And not necessarily together.  A person can be terribly hungry all the time, but have trouble digesting and processing food.  Or a person can have little or no interest in eating but digest just fine when they actually do eat.  Or any combination or degree of the above.

In our house, autism is HUNGRY.  All the time.

When CJ was little, I would get his snacks for him as you would expect.  He asked.  I gave or withheld as appropriate.  Good mommy.  As he got older, he was able to get more and more things for himself.  I thought, “Independence!” and also a break for Mom.  What an excellent job I was doing!  Until the day that I bought and put the groceries away, and returned an hour later to discover there was no proof I had ever even left the house.  Everything snackable and openable without a tool was gone.  I suddenly realized that “self-serve” wasn’t necessarily in anyone’s best interest here because it didn’t come with an “off” button.  Despite my best lectures and hair pulling (mine, not his), my groceries kept disappearing, along with my food budget for the week and dinner for the rest of my family.  Now we were hungry too.

I started to get creative.

At first I would just put things up higher up in another cabinet.  Inconsiderately, CJ grew.  I started putting the snacks in my room in the closet.  Mom’s room was off limits.

Not.

Then I started keeping our food in the trunk of my car.  Guess who found the keys to the car?

I have a secretary desk in my room that locks.  I shoved the food in there.  He broke the lock and forced it open.

Of course, it was never HIM…no no…when the snacks were all gone.  He would tell me this standing in the middle of a trail of crumbs on the floor leading to his room with more evidence around his mouth for added emphasis.

Pantry

 

We have an old coat closet, between the garage door and the bedroom that has been converted into a pantry.  It’s a double door arrangement with two handles.  The goal was food in, CJ out.  We tried a child lock, but he could work that.  So now we have a bike lock wrapped around the handles.  If CJ figures out how to crack this one open, no bike or bag of chips in the neighborhood will be safe.

 

With the pantry problem solved, the refrigerator remained, a cold, vertical, well-lit buffet for the 3 am snacker with no off switch.

No.  Just…no.

Fridge LockWe went shopping.  The big requirement for a new refrigerator was having handles that would work with a bike lock.  Try explaining that to the salesperson on the floor at the big box store.

If the locks are not tight enough, you can pull the doors open a crack and reach an arm in.  If your arm is long enough, you can reach snacks way in the back.  Guess who has really long arms?  The only problem is that the opening is big enough to get your arm in…but not big enough to get it back out again with your ill-gotten snack booty.

One day, secure in the knowledge that my hunting and gathering were protected by the best that  Kryptonite and Masterlock had to offer, I drifted off into an afternoon nap.  Not long after, I awakened to screams of terror and pain.  Clearly, there was a fire with traumatic burns or an partial amputation or a collapsed wall with crush injuries in the next room.  Nothing else could possibly have provoked the roaring din coming through my bedroom wall.  I heroically rushed in to save whatever was left of the house and/or my son…to see what had happened.

Nothing had happened.  He had cracked the fridge door and put his arm inside to pilfer a goodie and he was stuck.  He was stuck because he refused to let go of the lemonade container or the snack in his hand.  Yes.

This has happened more than once.

The doors to the pantry are hollow.  Hollow doors do not hold handles well when a great deal of force is applied…and I assure you, a great deal of force has been applied.  After all, there are Cheetoes or pretzels or “insert your favorite snack here” on the other side of the door.  This has led to many, many, many repairs to the doors.  We now have long screws that go all the way through the door with bolts to hold it all on.  My husband is convinced we will never be able to sell the house now, because it would be too hard to explain.

Everyone except CJ knows to lock the cabinet when done.  It is funny that I will go to open it even when he is not here and one of us will have locked it out of habit.  We have the combinations written down and CJ knows where they are.  He will helpfully tell the respite worker where they are when she visits.  Luckily for me and my grocery budget, he hasn’t figured out how to work them.

Yet….

 

 

Holiday Overload

Xmas-Tree-Site_91One week from Thanksgiving.  One week and one day before Black Friday bleeds into Brown Thursday (stores open at 6 pm!).  It’s time to bake the bird and then start hauling out the tinsel and garland and strings of lights.  Time to dust off bad holiday sweaters, 18 different versions of “Silent Night” on 18 different holiday albums, and family traditions while counting the number of shopping days left.  Time to panic about how little time is left to get it all done.   Time to bounce between looking forward to so much of it all while wondering at the same time when it will finally be over.

Really not that different from CJ’s point of view, that last part there.  He has a special relationship with the holiday season, sort of like when Dumbo had a special relationship with that bottle of champagne and got pink elephants.  For us, Christmas is a combination of stress and joy.  For CJ, it’s an annual ticket to a roller coaster of sensory overload.

We’ve learned so much over the years…survival techniques that give CJ a fighting chance to enjoy some of the holidays without being buried in stress and confusion.  Not everyone around us understands or approves…after all, our traditions are not all “traditional.”  Autism can color our family’s red and green another shade entirely at times, and looking at it from the outside in, one might be tempted to write us off as spoiled or frustrated or inept or unpolished or undignified.

So, as CJ’s advocate, translator and shield,  I’ve developed my own little holiday tradition.  To friends and family each year, I send out a letter from The Other Side.  It’s one that’s been posted on sites all over the Internet.  I have no idea who wrote it originally, so I can’t give credit, which is a shame, because it’s worth crediting.  The letter was an eye opener to me the first time I read it, even though I’m in the thick of things and you’d think I’d get this by osmosis by now.  It’s a timely reminder as we go about our business that the holidays are not just a time of giving and receiving, they’re also a time for a little extra patience and understanding.

*************************************************************

Dear Family and Friends:
 
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
 
Thanksgiving & Christmas are some of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
 
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
 
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by okay. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard. When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
 
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
 
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired.
 
Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope.
 
Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
 
Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
 
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!
 
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This letter has changed our lives over the years.  I hope it will make your holidays just a little smoother as you hit the stores and parties.

 

Autism Fact or Fiction?

autism fact-fiction largeWhen CJ goes out in public, his behavior makes it apparent pretty quickly that he’s dealing from a different deck than you or I would, particularly in social situations.  Autism brings its own pack of cards to the table, and no one has any choice but to deal…including CJ.

Like every family, we need food and toilet paper and sunscreen and laundry soap and school supplies and hardware and clothes and the latest Air Bud DVD’s.  However, unlike most families, any trip we make into the outside world always offers the possibility of becoming a public curiosity, if not a public spectacle.  Some people ignore us.  Some people deliberately, conspicuously ignore us.  Some make lots of room.  Some smile and walk on.  And some stare.

One day when I was in a flippant mood, I asked a cop where the law stood on autism and its potential to create socially weird situations.  Her reply was that no one can do anything about strange, as it’s not illegal.  I found that a bit comforting, as I am sometimes strange myself.

As CJ has matured into an adult, I think we may be becoming more peculiar to the unaware eye.  Most people, by now, are able to see a child and see some of the behaviors that autism can cause, and can put two and two together.  I don’t think very many people have even considered the idea of an adult with autism.  When CJ and I walk through a store together, it can take fellow shoppers longer to put that two and two together, because the back support of dozens of magazine articles read and news segments watched which cover adults with autism just isn’t there…yet.  Meanwhile, a whole bag of other explanations can occur to people which can make them intensely uneasy.

And I will tell you, up front, that as a mom in this situation, I have learned to pretty much just ignore it all.  The social worry will eat you alive if you don’t shut it down.  As long as CJ isn’t misbehaving within the bounds of reasonable social tolerance, I can’t let myself care about all the small individual social crises we may be causing as we push our cart through Target.

Unless…

Every so often, someone will surprise me and just ask me questions about CJ and autism.  While it can be annoying while I’m trying to hunt and gather for my tribe, I appreciate that most of these questions are well-meant and innocent.  And I really do try to answer the best I can.  I’ve become something of an expert at sorting out the sincere from the mere social curiosity.  Some people don’t really want answers…they just want to gloss over the awkwardness and move on without feeling bad.  Some questions just make me laugh or roll my eyes.  Fact and fiction can get blurred in a hurry when all you bring to the situation is “that Temple Grandin movie” and a vague memory of Tom Cruise and Dustin Hoffman coming down the escalator in “Rain Man.”

I think that many people assume that autism is CJ and CJ is his autism.  They see autism as something that completely separates the person from anything ordinary and changes everything so radically, there’s not much left for the average person to relate to.

Not so.

Fact—CJ is 18 years old.  Autism or no, here we are.

Fact—CJ loves sports.  LOVES them.  Why?  I don’t know.  He always has.  Why does any teenager love sports?  He was never interested in cars, trucks or Legos.  He would rather bounce a basketball or toss the football around, or watch someone else do it on TV.  Meanwhile, my friend has a typical son who is obsessed with Legos.  LOVES them.  Why?  He likes them.  And no one questions him.

Fact—CJ likes the color green.  Why?  I don’t know this either.  I like red.  Given a choice, I will always choose red.  In fact, it’s so pervasive, it’s a family joke.  CJ doesn’t prefer green just because he has autism.  He likes green because he likes green.

Fact—CJ is funny, personable and well-liked by his peers.  Why?  Because he has a sense of humor, enjoys some interactions with people, and usually has a great attitude.  I would like to say that it is because he inherited from me, but who knows?

No…yeah…I’m going to claim that one.  He inherited that from me.

Fact—CJ is autistic.  It is a diagnosis. It is a condition.  It is NOT who he is.

Fiction—all autistic people have a special skill.  Something that somehow counterbalances the “cost” of the autism.  Like a gift for numbers or dates or musical talent.  NOT true.  There are only a small percentage of autistic people who are savants.  Most people with autism are just that…ordinary people with autism.

Fiction—Autistic people are, by definition of the condition, mentally challenged (or my all-time favorite, “retarded”.  Yep.  I went there with the “r” word).   CJ has multiple tests measuring his IQ within normal range.  Just because he doesn’t use his brain power the same way you or I do, don’t underestimate him.

For example, his sense of time is both unique and remarkable.  First of all, don’t tell him you are going to do something unless you mean you will do it NOW or soon!  The future is any point from from now forward until he’s tired of waiting.  “Yesterday” is any time from a moment ago until his first dim memory of anything that might make his point right now.

Also, he remembers EVERYTHING!  Memories may not be in a logical pattern for our convenience, but they are in there, fresh as the day they happened.  He will occasionally bring up things that happened years ago.  I am talking 10-14 years ago.  Usually out of context…or so I think at first.  When I finally figure out what on earth he is talking about, I realize what he’s recalling was generally not one of my finer moments.  And I realize what I have is a teenager with a steel trap memory throwing my past parental missteps back in my face.

How just plain ordinary is that?

Fiction—People with autism who are non-verbal can’t understand what is going on around them.  NOT true.  They are very aware and will often react to their surroundings and what is going on and being said.  So when you approach that mom pushing the cart in Target with a question, keep in mind that you have a larger audience than you may think.  You can insult, hurt or frustrate a person with autism, just like you could any person overhearing what you say.  You can also compliment, empower, and lift the self esteem of both that mother and her child by the words you choose and the way you ask your questions.

CJ is first and foremost a person with his own interests, likes and dislikes.  He also has a condition called autism that causes both him and us difficulties in his day-to-day life and classifies him as “disabled”.  He is my son, a brother, grandson and friend to many who see way beyond the label.  Autism has not destroyed or damaged his personality, although it may make it harder for him to express it at times.  It’s all still in there…a bright light filtered through an autistic sieve, bursting out in all kinds of colors and angles and occasional glares.

See you at Target.

 

Guardianship of an Autistic Adult

ambivalent smileyWell.  It is done.  I can’t decide if that should be in capital letters with a big smiley or in teeny tiny letters with a serious scowl.

We have the finalized guardianship paperwork for CJ.  It is stamped, signed and filed with the court and is now a matter of record.  I had such mixed feelings when I opened the envelope and slid the papers out into my hand.  I’ve been working on this and sweating it out for months now, feeling certain that we got on top of this whole thing in a timely way.  At the same time, I was feeling at sea, out of control and unsure that the system would work the way it was supposed to.  It did.  And now I can only liken it to the day after a big event, like a wedding or party… you plan and plan and organize and push and race to the finish line.  And then it’s over.

It felt so final and so flat, standing in my kitchen with a handful of paper.

I had a friend compare it to getting your final divorce papers two years after the end of the relationship and a year after the divorce agreements were done.  I have never been divorced, thankfully, so I can’t answer to that one, but it feels true somehow.  But while a divorce is an end of one thing and the beginning of many other possibilities, this just feels like a beginning.   A beginning with no end.  A beginning that will define the rest of our lives…and “forever” right now feels like a cell door clanging shut.

This is it.  With all the years of therapy and alternative points of view and experiments with diet and drugs and new outlooks and methods, here we are.  It could have been so much worse without all that…but it’s not going to get better either.  My son is an adult and has been declared legally unable to manage his own affairs.  This will be our truth until my husband and I die and it will be CJ’s truth for as long as he lives.

It is a relief to have things defined and finalized.  But it’s a life sentence at the same time.  I’ve been a warrior mom for as long as I’ve been a mom.  The job description for the mother of a child with autism would fill a library shelf…but there’s not much in it about global acceptance. We learn to accept limitations over here and start working out therapies and ways around those limitations over there.  We give here and push back there and fight and cajole and adjust and flex around and never, ever give up.  So I haven’t had much practice at just accepting.

I guess I’d better get started.

A few weeks ago, the preliminary paperwork came by email for review and I printed it out.  I skimmed it several times.  It all seemed standard.  As CJ’s guardians, we can determine where he lives, his medical treatment and make social decisions for him.  All the things you would expect.  I handed it to my husband when he came home from work.  He read it, made a few comments…and started laughing.

???

Me:  What on earth??

Him:  It says here:  we may NOT commit him to an institution.

Me:  I…wait…what?

Him (still laughing):  We also can’t consent for sterilization OR… (my favorite) for him to be part of an experimental biomedical procedure.

OK then.

I can see why they would include some of these things, but it’s kind of disturbing too.  Heck, me…I was just worried about being able to talk to the school and the doctors.  Entering him in some biomedical experiment hadn’t exactly occurred to me.  Perhaps I lack imagination.  I don’t think CJ would be on board unless there was a guaranteed outcome of turning him into a Florida State halfback.  But I just keep picturing Frankenstein.

It’s funny that now that he’s an adult, we have less freedom in some ways than when he was a minor.  He’s now under the protection of the court and we are answerable in a way we weren’t when he was a child.

I wonder if we could have entered him into biomedical experiments as a minor….

Chris and I still have to take a class to learn all the rules and accounting procedures involved in guardianship.  And we still have to create an annual plan and have to submit that plan to the court each year.  Just wait, Your Honor.  Just wait.

Because, you see, now that this guardianship thing is out of the way, I can finally turn my full attention to pulling together all the threads involved in getting CJ’s House out of my head, on paper and into reality.  There are CPA’s and lawyers and experts and donors and other parents to talk to…and boy, you want to see a plan for CJ’s future?  ‘Cause here it comes.

Sorry…but that whole Acceptance thing may just have to wait.

 

Shave and a Haircut…plus Teeth

angry toothbrushRecently, I was cutting CJ’s hair and giving him a shave, and it suddenly occurred to me that this was one more weird thing in the strange little world that is our Normal.

CJ has sensory integration issues.  A few years ago, I would have put that phrase in quotes.  Now, I won’t bother, as more and more people have become aware of what that is and that many children struggle with these peculiar sets of disconnected perceptions.  Many people now know of the kid who can’t bear the top seam of a sock across his toes, or the wind from a fan blowing across face or legs, etc.  Even the corporate world has gotten wise in a few cases.  T-shirt manufacturers have started making shirts with printed tags instead of sewn-in tags.  (This is great for the kid who would otherwise pitch a tag-induced fit and proceed to claw his shirt off in the middle of church, but not so great for moms everywhere trying to read the washing instructions in the tattered stamp of a well-worn Angry Birds XXL.)

Everyone has worn a scratchy shirt they couldn’t wait to get home and take off.  Most will wait until they get home to actually disrobe, however.  Everyone has had someone yank on their hair too hard.  “Ow!” or “Excuse me, not so hard!” usually stops the offender and life goes on.

Not if you have sensory issues.  A scratchy tag or a pull on the hair can produce an instant “fight or flight” response and you can find yourself running after your child with autism in the middle of a church sermon or struggling to put his clothes back on in the aisle at Walmart.  On a really bad day, you may find the entire contents of your garage scattered across five or six of the neighbors’ yards while the police walk up your driveway with professional smiles on.

Haircuts.  Tooth brushing.  We take them for granted.  Now…imagine that getting a haircut is actually physically painful.  Imagine that brushing your teeth can actually hurt.

Welcome to CJ’s world.

When CJ was very young, we had a neighbor who was a hairdresser.  She would cut his hair with scissors while he was in a swing or in his high chair.  It worked.  But as he got older, it wasn’t as realistic.  For a little while, we had someone who would come to our house.  Then I tried taking him to professional places a few times.  One visit ended with me pinning him to the floor in the middle of the salon while the stylist attempted to finish.  I can’t describe to you the end result but it was one-of-a-kind.  Later, we had a neighbor who cut her boys’ hair and she would do CJ’s as well.  For some reason, with her he tolerated the clippers in short doses even though the buzzing would drive him crazy if anyone else tried.  I didn’t question it and thought of it as a gift from the Haircutting Gods.  When she moved, I was once again at a loss.  Then CJ told me that he wanted me to cut his hair.

????

I do NOT cut hair.  No, no no no no.  I knit, I craft, I cook, I bake and I’ve even been known to laminate stuff.  Hair?  Okay, french braids…I’m all over that.  Pony tails and head bands…sure.  But actually cutting?  We did not own clippers.  I had no idea what to do.  Just…no.

But…the alternatives were a child who looked like a refugee, plus pointed, disapproving stares in public, and a monthly wrestling match at Super Cuts (if they’d still let us in the door), or…clippers.  So I bought a set and learned.  Never let it be said I can’t be moved by the twin motivators of public embarrassment and saving money.

At first, I needed something to practice on, and I can honestly say that this was the only time I have ever wished we had a dog.

Here’s what I now know:  if you cut on a #1, it lasts longer.  If you do a #1 all over, it is less noticeable if you screw it up.  CJ has curly hair and mistakes are hidden better that way.  We are all about the #1 cut at our house.  Some cuts go pretty well.  Some cuts do not.  He does NOT sit still.  Therefore, giving CJ a haircut can be something like shearing a sheep.  Grab, wrestle, grab some more, twist, throw a leg over if necessary, ignore the loud complaining and avoid actual bloodshed.  We have had a few interesting results.  Luckily, hair grows back, though his grows a little too fast for my taste.

Sensory issues don’t end with hair, however.  There’s the matter of oral hygiene, a daily torment for both the child with autism and the parent with a child with autism.  In CJ’s world, a toothbrush is a weapon and Mom is a marauding dental demon.

When he was little, I would pull his comforter up to his shoulders with his arms under it and pin him down with my knees on his shoulders.  When he screamed, it was my chance to jam the toothbrush in and start brushing.  I was big, he was small, and I was tired of chasing him around the house each day.  You’d have thought I was wielding a chainsaw instead of a Colgate-laden toothbrush.  Of course, as far as CJ was concerned, it was about the same thing.

That was SO much fun.

NOT!

Now, thanks to the miracle of years of occupational therapy, he has learned to tolerate much more these days.  Brushing we can do, but he still cannot get his teeth cleaned at the dentist.  He has to be put under general anesthesia to have any dental work done.  Insurance doesn’t like that.  I don’t like it.  CJ doesn’t like it.  I don’t even think the dentist likes it.  Certainly my wallet doesn’t like it.  But there is an amazing organization called Grotto that will pay for dental work for persons with developmental disabilities.  They covered all of our out of pocket expenses more than once, and CJ has managed to keep all his teeth so far.

Except for his wisdom teeth, which had to come out last year.  He did really well.  He has an amazing ability to heal ridiculously quickly.  Like, superhero/vampire quickly.  That works well for us, as the prospect of a 17 year old, 200 lb teenager with autism running around or trying to eat with bloody holes in his jaws is enough to make me hide in my locked bathroom with a Kindle and a week’s supply of food.

My new least favorite sensory overload activity is shaving.  CJ is nearly 18.  There’s more hair now, and the bearded Victorian look hasn’t come back in vogue yet.  (I keep hoping)

Shaving involves razors.  Razors are sharp.  Picture me, CJ and a razor and use your imagination.  Go electric, you say?  Ah, electric razors work, but only so well (the closer the shave, the longer we can go to the next shave, you see) and they vibrate…so you see where this is going, and we are back to the sensory issue.  Shaving a moving target is even more interesting than cutting the hair of a moving target…and you can’t go a month or two in between.

Luckily, so far, CJ has only been nicked a few times.  Most have been minor and I take full credit for my new, deft shaving skills.  But once it was my fault and it was on his lip.  Anyone ever get a cut on their lip?  It bleeds like you’ve sliced an artery.  And it does not stop bleeding.  I know they say that “head wounds bleed,” but they didn’t say for how long, or what you can do with it while it’s happening.  Together, CJ and I have discovered that if you flail around and carry on like a wounded dragon, you can get blood on your shirt, your towels, your bedding, other people, the cat, and anything in the general vicinity.  If anything suspicious ever happens in my house and they bring in one of those ultra violet lights they show on crime shows to look for blood, I’ll be put away for 20 years with no hope for parole.  Clearly, they’ll say, there was a murder in my kitchen, and they’ll start digging up my backyard.

Luckily, I have witnesses to what actually happened…my daughter, who is underage, and the cat, who isn’t talking.

 

The Thin Red Bottom Line

autism Man_and_dollar_crack_01Numbers.

Numbers are what is going to make this all happen. You can draw pictures and talk up a storm and imagine and research and take meetings, but where it gets really real is staring at the column of figures running down to that bottom line.  All the statistics and head counts and years don’t mean jack in the end because “numbers” means money.

Plain and Simple.

You need money to make anything happen.  Money makes the world go round.  Numbers point you straight toward the truth, and the truth is that the numbers say nobody trying to do what we’re trying to do has enough money.

I’ve spent the past two weeks getting some preliminary numbers together.  I had a meeting with a company that runs group homes.  They were a wealth (pardon the pun) of information.  I learned that they will provide the staff, the training and handle just about everything related to that for you.  That led to my first concrete number regarding the cost of staffing a group home.  I am hoping it was wrong.  I’m sure it’s not.  Are you ready?

It will cost over $200K just to staff the home for 5 people.  Per year.

That’s the first aggregate number in the Expense column.

Additional costs will include:

1.  The purchase of a house (either downpayment and mortgage, or full purchase price)

2.  Renovations to bring the house up to code

3.  Refitting to create an autism appropriate and friendly environment

4.  Insurance, all kinds

5.  Maintenance

6.  Utilities

7.  Furnishings

8.  Security System

None of this includes daily living expenses such as clothing, food, medical care, transportation, and entertainment.

The preliminary expense column is now at more than $300K not including initial startup costs for the foundation (so we can do several houses) and the mortgage.  Divide that by 5 residents and it’s at a minimum of $60K per year.

Meanwhile, over in the income column…an adult with autism will get just over $700 a month in SSI benefits.  Even if you flunked math on your way to the top, you’ll sense that this just doesn’t add up.

All of this calculating will eventually be going into a business plan.  A business plan with a big hole in the middle at the moment.

The only way to make this work is to raise the money.  Every single year.   Now…how to raise that kind of money???

I have a few ideas but I’m open to suggestions.

 

In The Beginning

SayNoI had two meetings last week.  One was with a team that provides housing and care in the Orlando area to people with developmental disabilities through a variety of facilities.   The other meeting was with a person deeply dedicated to education and support for special needs children, with ties to the academic, the PR and the financial worlds.

This was not a typical week in Kathleenland.  Less carpool and more business plans. As I sat in the Mexican restaurant that night, hoarding my own personal salsa bowl, eyeing the waiter for another margarita and listening to publicity this, architecture that, and employment what, I found myself wondering what happened.  How did I get here?

How did all of this start?

Well, I’ll start with what I know:  I know I am not good at taking “No” for an answer.  (Just ask my poor mother.) This character trait has served me well most of my life.  It has gotten me out of situations and into places before.  I”m pleased to say there are no arrest records or embarrassing tattoos so far, and I’ve gotten into lots of places for free.

Of course, autism doesn’t take “No” for an answer either.  And this has set the ground for the ongoing major conflict of my life.  The Irresistible Condition meets the Immovable Mother.  Cue John Williams soundtrack.  When people talk about “The Face of Autism,” they generally mean charming examples of children, and the images of dedicated parents and teachers leading the way…all things that just makes you want to say “Yes!”  What they don’t think about is “The OTHER Face of Autism” which involves insurance companies and state and federal agencies and physician offices and a whole lot of organizations whose reflex response is usually “No.”

So a genetic inability to take “No” for an answer has helped immensely over the years in getting what CJ needs.  I found out very quickly that entitlement was a very small part of the picture.  Oh, services existed, but you were not guaranteed them, tax dollars paid or need notwithstanding.  And once you called or applied, you would quickly and easily become a number in a pile, competing with thousands of other numbers for attention of someone’s desk.  I also realized that there was more than one way to be told “No.”  I didn’t need a person on the phone saying it in my ear.  Just the days and weeks and months of waiting in the silence with no reply was a kind of “No” too.

Did I mention I don’t do “No” well?

The squeaky wheel does get the grease.  Everyone knows that.  It’s true.  I learned to squeak.  But I found out that the kind of grease was just as important as the squeaking.  I learned to grease nicely.  Politely.  Relentlessly.  My grease is now a fine mix of “thank you so much” and “I know that when you understand everything I’m about to tell you, everything will get straightened out because you’re the wonderful, thoughtful, compassionate person who is going to help me solve this problem,” and “Of course, and I will call you tomorrow to follow up.  And the next day.  And the next.”   It’s a delicate operation.   Too much grease and you present as a harassing stalker and you drop to the bottom of the pile.  Not enough grease and you just plain don’t move.

I also realized that insurance companies wouldn’t pay for therapies.  If there were things your child needed, you had to figure out how to pay for them yourself.  I knew a few people who did have money or had family with money and they sailed through.  Most people, however, were flying by the seat of their pants.  I met one woman who was cleaning out her carefully planned retirement accounts one by one as her child grew.  I met other people who were setting up “home programs” (insert “desperately attempting to do as much as home as they could”).

And through it all, I kept thinking that if I had money, a lot of money, I would set up a foundation that helped people with the these costs.  When something like this becomes your “lottery dream” instead of a vacation house in Aruba, you know things have begun to change in your life.  The whole “Foundation” thing has stayed with me.  It changes based on our needs and the needs of people I know.  As schools open, I think how nice it would be to fund tuition for the kids who need it.  I keep dreaming and “the Foundation” is always there in the back of my mind.

A few years ago, I had a mother tell me that there was no housing for adults with autism.  Well, I just knew she was confused, as I had talked to “my” people about services and what the future would look like.  They had explained to me how it would work when he was an adult.

The problem here was that this mother was a good friend…someone who knew what she was talking about.  The snake had entered my garden.

I did some checking.  And yes…there WAS housing.  Yes, CJ was eligible when he turned 18, or even younger in a crisis situation.  However…there was no “available” housing.

NONE.

My friend told me that she and her husband were considering buying a home themselves.  They had even looked into using their current home to house their adult child and moving themselves into something smaller.  Wow.  Now my ears were open.  Not long after that, another mom told me that she was thinking about trying to get some parents together to buy a house and try to staff it or “co-op” it.  OK.  Now, someone is trying to tell me something.

CJ was about 16 at this time.  Their kids were older, and I had a few years…no big hurry.  But…I have learned over the years to “be prepared” (I was a Girl Scout, after all).  So, I started talking to people and getting information.

Are there homes? Is there housing?  Yes.  Is there a wait list for these?  Oh, yes.  Years worth.  And is there housing that I would be okay with CJ living in?  Housing within reasonable driving distance?  Housing that would let CJ live at the top of his range of abilities?  Housing that would foster the need for friends and reasonable socialization, taking into account the limits that autism puts on how he can be social?  Is there housing where CJ could be happy?  Housing that could be a real home and not just an institution?

Maybe not so much.

About six months ago, I got a call from Judy Owen, an old high school friend.  She blogs for Forbes at www.forbes.com/sites/judyowen/, which is really cool.  Even more cool,  Judy started an employment agency in St. Pete, Florida for persons with developmental disabilities.  Opportunity Works (www.opportunity-works.com).  Check it out.

Judy had called to ask me to be her “plus 1” at a benefit for the Able Trust.  It sounded great!  Let me make it happen!  I ran home and Googled it.  $1100 for a table at this benefit, with a silent auction.  And me with nothing to wear.

But…I made it happen.  And before I knew it, I was at the Orlando Museum of Art.  Very nice.  I don’t get out much (shopping at WalMart does NOT count), so it was extra fun for me.  I figured I’d go along, stare at the dresses and drink the wine and just have a pleasant evening. I mean, I kind of know the drill with this sort of thing.  Fish out of water I might be, but shy, I am not.  I introduced myself to everyone.  And of course, they always asked “So what do you do?” And when I said that I stay home to care for my son who is autistic, usually the “shield of politeness” comes up.  It’s invisible, but unmistakable when it is raised. People are always nice, but once they realize my life is out of their range and I have nothing to add to their ambitions, they look to move on.

Not tonight.

People would turn to me, they would lean in and show more interest.  They would ask me questions. They cared about my answers. They wanted information from me.  Strangely, I seemed to have information they wanted.  I had to think of answers as no one had asked me some of these questions before.

One man asked my favorite question.  “What are your son’s goals for the next 5 years?”   I actually laughed.  I said that his goal in life was to sit in front of the TV, eat chips and “rewind, play, rewind, play”.  The guy laughed and said, “Isn’t that every man’s goal?”  Funny, but he was serious, though.  They all were.  What were our needs?  What were they doing or not doing that would affect us or someone like us?  Each of them in turn introduced me to others that they knew.  My head was spinning.  I hadn’t brought a notebook to record all of this.  I couldn’t even keep them all straight.

I met the new dean of the Marino College opening in Ft. Lauderdale.  I met people with Project TEN who help with post-secondary training.  I met people with the Able Trust.  And about 10 others that I can’t remember because Judy didn’t tell me I’d need to take notes in between drinks.

The most interesting conversation I had was with the man from the Agency for Persons with Disabilities in Florida.  He went out of his way to talk to me for a long time.  He explained that nothing is going to change in FL with APD.  From talking to people in other states, it appears that the only changes that are happening anywhere are negative.  There wasn’t any kind of program or plan on the horizon that acknowledged that half a million adults with autism are on their way to Housing Nowhere.  He told me that what I needed to do was to get with some other parents and find a house, apartment or condo to rent.  He suggested we staff it with college students, as typical care workers tend to be unreliable.  (Now THAT I knew…although it’s sobering that college students, who are allowed to be transient because hey! it’s college!…they are considered more reliable that the average care worker.)  He was confirming I was on the right track with doing it myself, and sadly, there was no silver platter or lottery coming my way.

But there still was this Foundation thing….

Later, I got with Judy to try to sort out who was who.  I actually made a list and typed up notes.  Lists lead to more lists.  Ideas started leading to other ideas.  And people to people.  All of a sudden, this wasn’t just a pipe dream.  All of the sudden, this idea of mine wasn’t just in my head.  It was bigger than I thought.  It was bigger than me.  All of a sudden, it was real.

Six months feels like a long time ago. I’m way ahead of where I was, and I’ve gotten repeated confirmation that I’m on the right track.

A house for CJ is going to happen.