Archive for Just Plain Sad

TeachLivE 4– A Little Too Real

TeachLivEThere are times when you feel like you have entered the twilight zone. There are times when things that aren’t real feel just a little too real.

A few weeks ago I attended the 4th Annual TeachLivE conference and entered an all too real virtual reality that I was unprepared for. I was especially excited as they were going to unveil the new kindergarten avatar modeled after CJ. I had been working with the young, future PhD, also known as CJ’s former teacher, to develop him. I had provided evaluations, videos, photos and feedback to make him as real as possible.

I loved getting preliminary drawings and giving my input. He, once again, looked remarkably like CJ did back then. He does not wear green as back in the day, CJ did not always wear green. I had seen photos of the avatar and had heard what he would be able to do. He was still in development, but they were going to unveil him to the public.

The learned their lesson last year and I was NOT speaking. They mentioned who I was in the opening session and I waved my hand. No one would even remember. I was safe and incognito this time.

The breakouts began. They had stations in a large open area. Each station had it’s own screen for presentations and casual seating, but was open to the entire area. I sat front and center so I could take some video. I was really excited. I’m a pro at this. I’m ready.

Kindergarten AvatarsIt starts with a little girl and kindergarten CJ, who goes by Martin to protect the innocent. They were sitting on a rug in a kindergarten classroom. The little girl is vivacious and talkative. She “helps” and just can’t stop herself from answering for Martin. (Reminds me a little of me.)

They ask for volunteers. One of the PhD’s got up and interacted with them. She tried to engage Martin several times. He would hesitate and hem and haw. The little girl would interrupt to “help”. After three tries, the PhD just switched to the little girl.

I was a little disappointed. These were teachers, PhD’s, PhD’s who teach teachers. It was only the first one and they were only testing it. They weren’t set up to teach a lesson and not all of them deal with children this young or ESE students.

The second person got up and only tried once to interact with Martin.

A strange thing started to happen. I started to get upset. My Mama Bear was starting to rise. I wanted to step in and I wanted to explain. I wanted to protect the avatar.

Now my internal dialogue starts.
“It’s an avatar.” “It’s not real.” “It’s not CJ.” “They are not used to doing this with this avatar.” “These are professionals.” “These are only a few minutes each.” “This is not real.”

Kindergarten at tableThe third volunteer gets up. She actually kneels down so she is at eye level with them. The technology allows the interactor to see where you are and where you are looking. She starts out prepared to get both of them engaged. She tells them they are going to write a story together. She says it starts out, “Once upon a time.”. She asks Martin to think of a person, place or thing he sees. She quickly realizes she has given too many options. She ends up asking him what animal he has seen. The little girls keeps trying to “help”. The PhD keeps telling her that they are going to give Martin some time to answer. Martin rocked back and forth. Martin repeats, “See. See. See.”

I was so excited that she was going to be able to draw him out. She obviously has worked with this age. I was impressed. Then she decided to help him out. She says, “The animal starts with a C? It must be a cat”.

OMG! NO! NO! NO!!!

I take a deep breath and narrowly escaped my outburst. She is trying. There is a large group watching. I have no way of knowing her experience or expertise. I have myself under control now.

She now wants to know the cat’s name. Martin rocks back and forth again. He repeats, “Cat. Cat. Cat.” I’m holding my breath by now. The tears are welling up and spilling over. The PhD decides he wants the cat to be named Cat Cat. I jump up and run out. The bathroom is right behind me. I leave all my stuff there. I can make it. I can do this without making a scene. Or not…….

My voice breaks as I really start to cry. I run into a bathroom stall. I have been thrust back in time. It was a true PTSD moment. I had so many memories flood over me. I thought all this was safely filed away in labeled folders to only be opened when I needed some information.

I just wanted to scream at the screen, at everyone. I wanted everyone to see how he was trying. He had an answer, he just couldn’t get it out. I wanted to protect him. I wanted to make them all understand.

I got myself together. I come out of the stall and the UCF genius creator of TeachLivE was standing there. She was alerted to my breakdown. So much for no one noticing my “quiet” exit. She got it. I told her that they didn’t understand, that they weren’t listening. I was completely irrational trying to explain what happened. She got it on every level. Her son has Tourette’s and is now in college. She remembers her son. She knows, she really knows. While we were talking in the bathroom, because where else do you talk at a PhD conference at a University full of conference rooms, another PhD came in to check on me. Once again, my nice quiet exit.

The genius comforts me simply by getting it. She wants me to know how valuable this is.

Session 2-

Now I’m standing in the back as there are no more seats, which may be a better place for me. A PhD came up to me to tell me her future ESE teachers need this. She thanked me over and over. She said her teachers will do what the PhD’s did over and over and ignore the ESE child. She said this is a safe way for them to make mistakes and learn. I know all this, but it doesn’t stop the pain.

As the day goes on several people talk to me to thank me. They are really excited about the possibilities for this avatar and the others. I decide if the prospective teachers can manage even a fraction of the suspension of reality that I felt, it will be amazing. What if even one child can be spared the pain? What if even one parent can be reassured? TeachLivE just continues to change the world.

Haunted Homecoming

Homecoming-King-Crown-with-Gold-Stars-000We went to the Homecoming game last weekend.  My husband, my daughter and I sat in the stands with the usual crowd of parents, alumni and students.  CJ, however, was on the field in his trainer’s shirt.  Because he has connections.  He is IN.  On the team.  The team has given him multiple jerseys now, but he doesn’t like the feeling of the new tighter fitting ones, so that night, he was a trainer.  He’s so cool, he gets to choose what position he want to be each game.  I wonder what will happen when he decides to be the coach.

Sitting there in the stands, surrounded by cheering and the band and food and the rooting loudly for the team, it was naturally the perfect time to think deep thoughts and get all emotional.  So I did.  Then I wished I hadn’t.

At halftime, they have the Homecoming ceremony.  It was so nice.  The girls all looked beautiful.  The boys were handsome.  The families of several in the court were sitting close by us in the stands and we got to experience their enthusiasm as they cheered for “their” candidate.  The King and Queen were crowned.  The new King is on the football and baseball teams.  He’s a boy who goes to our church and is a favorite of CJ’s, so CJ was right there at the seat of royal splendor.  When I thought about it, I realized that CJ was in a social position that half the kids at that school would have sold their iPads, iPhones and first cars to have had.  In a strange way, autism has given CJ the keys to some serious high school fantasy.

I sat across the field and watched as CJ spent a good part of the 3rd quarter touching the King’s crown and making comments we couldn’t hear from where we sat.  So close, and yet a million miles away.  And I almost cried.  I took lots of deep breaths.  I tried to avert my eyes.  At first, I tried to comfort myself like I always do.  I tried thinking how amazing CJ’s experience has been.  I tried thinking of all of the wonderful things he has gotten to do that so many other kids do not…something so very clear tonight.   I watched various alumni come up to him again and again to give him a high five, and I was thinking how amazingly wide his world is for someone caught in the narrowness of autism.

And then I got hit broadside with a whole load of “supposed to” and “I wish” and my heart suddenly turned on me.   I was thinking, again and for the hundredth time, that he was supposed to be a senior this year.  That he was supposed to be “a senior,” with everything that word implies…girls and cars and acne and locker rooms and SAT’s and college interviews and concerts and parties.  How do I explain, even to myself, that he will be here in high school for 4 more years?  How do I explain what that is going to look like?  How do I explain leaving the structure of the regular school track and entering this weird educational limbo that isn’t a next step to anywhere?

And then I was wishing with every fiber in my being that we NEVER, EVER had needed or asked for special treatment or exceptions of any kind.  I wished with all my heart that he never had any need for ANY special treatment.  I was wishing for that wonderful gift of being typical.  Of being average.

And I was thinking that wishing for that would probably be wiping away everything I was looking at across the field.  There was no guarantee that CJ would have been on the court or even popular if he was “typical”.   He might have played football, but he probably would have been one of many faces in the crowd, and it’s unlikely he would have been friends with King and alumni alike.

And then I realized I was actually sitting there thinking that I wished that he was an ordinary kid who tried out for football and was cut from the team.  That he tried out and didn’t make the team.  And I wished I could swap the mixture of pride and ache I always feel watching CJ’s popularity for that simple ordinary pain of not making the team.  I never thought in a million years that I would wish that.  On him.  On us.  Who on earth would wish that their kid DIDN’T make the team?  It didn’t make any sense….

Except I imagine that it would hurt so much less.

I have a 10 year old daughter.  She is beautiful, smart and well-liked.  Will she be on homecoming court one day?  I guess she could be.  There were 3 senior girls there tonight.   I am not sure what the size of this year’s class is, but it is at least several hundred.  Would my daughter be one of the 3 in her senior year?  Possibly.  It would be nice if she got to have that experience.  Would I be sad if she didn’t ?  I doubt it.  Her odds are the odds of the ordinary.  The typical.  We all ran those odds, growing up, winning some and losing some.  We know what those odds look like.  A few of us get the inside track in high school.  The rest of us remain socially unremarkable.  Would I be on the edge of tears if my daughter wasn’t one of The Chosen?  No.  I would not.

And yet, there I was, mourning that fact that CJ, in his own way, was.

My husband was there.  He is rarely with us at events like these as he works two jobs.  I looked at him and told him I was sad.  He knew immediately.  He understood.  And he pointed out how happy CJ was.  He mentioned that every person he had met that night…teachers, administrators, coaches, students…all said that CJ was “the most popular kid at school.”  I know it is all true.  I just sometimes wish it wasn’t because of the reasons why it is.

I am reminded repeatedly by friends and family that I need to allow CJ to bless others.  That CJ makes people better.  That I need to allow people to be who they are and to do what they need to do for themselves.  That CJ changes people.  That knowing CJ changes your life.  That knowing CJ makes everyone more aware and more patient and more understanding.  Being around CJ makes you happy.  CJ makes you laugh when you don’t want to.  CJ can make you look at the whole world differently.

All of this is true.  I was sitting there that night with the evidence of all this right in front of me, watching CJ touch the crown of the King over and over and wondering why I couldn’t feel what I was “supposed to” feel.

I have watched a lot of football games, and I have asked myself again and again:  Do these young athletes even begin to understand?  Do THEY get what they have?  Do they have any idea what they represent?  The high school players represent all the boys who played Pop Warner and backyard football.  The college players represent all the boys who played high school.  And for the mothers of special needs sons who will never try out for the team, they represent that ghost child…that phantom “might have been” son who will never have the chance to try out and make it, or to fail…to try and to not make the team, and take up track or soccer instead.

No, of course they don’t get it.  Nor should they.  One of the great things about being young is that your ghosts haven’t arrived yet.

This year, I thought I could go to Homecoming and skip the haunting.  This year, I thought I could look at high school football players in their jerseys and not cry.

Maybe next year.

 

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.

 

Never Leaving Neverland

Lost boysThis is the year CJ should be graduating.  He did repeat kindergarten, but he should be graduating this year.  I say “should be” because the kids that were born at the same time he was are graduating and going on to college.  As always, this is all bittersweet.  I am so happy for all of these great kids, especially the ones going to my alma mater.  There is real joy in watching them reach this milestone, ready to take on the world.

It has been so sad for me, though.  It brings back all The Nevers…all the things that will never be.  And it starts the grieving process all over again.

I occasionally make home videos for fun and I was asked to do a senior video for a young man who is just a couple of months older than CJ.  As I begin the project, I start putting together photos of this young man as a child.  He is wearing the exact outfits that CJ had at that early age.  He is playing with all sports toys like young boys do.  In the photos, I watch him grow up.  He now plays multiple sports.  He is a big, athletic kid…a baseball player, with big brown eyes and brown hair.  And he looks so much like CJ in some photos that I almost did a double take.

It was a gift for me to do this for them and I loved doing it, but at the same time, it ripped my heart out in a way I never, ever expected.  This young man has a scholarship to play baseball at a major university.  His brother plays football.  They are good looking, smart and nice.  I am beyond thrilled for them to be able to do what they love so much.  But it tears my heart out all the same.  I don’t want to take anything away from anyone else, especially anyone who deserves it this much.  But I just wanted CJ to be included in this dream, to be a part of our own milestones like this boy is experiencing, and once again, he is not.

CJ’s 18th birthday will come and go, and he will return next year to a wonderful school with wonderful teachers and kids.  He will help with the football and baseball teams.  He will continue to learn and grow.  He will increase his job skills.  We will find a way to make a house for him.  And he will be fine.

I will be too.

Eventually.

Our New “Normal”

CJI have had various and numerous “moments” over the years.  When CJ was in about the 3rd grade, the school tried to get me to sign off on him ever getting a diploma so they didn’t have to give him the FCAT.  My friend Sarah, who had been such a help, told me that I didn’t have to do that and that I could insist they give it to him.  If he didn’t take it, CJ would not be eligible for a diploma later even if he completed all the work.  I just wasn’t ready to “give up” on him at the age of 9 and told them that.  They were really nice about it, but looked at me with “that look”… you know…the one that says “she is still in denial”.

I had moments every time we missed a milestone.  Silly ones, like little league or parties.  One day when he was in elementary school, I saw something on TV about proms.  I got hysterical that he would “never be someone’s dream date for prom”.  My husband talked me down out of the tree by pointing out that CJ would NEVER want to go to prom anyway.  Apparently, prom is hell, no matter which way you’re coming at it.

When he was in middle school, it just became more and more apparent that he really needed life skills more than academics.  It was becoming questionable if he would ever “really read”.  I started focusing on reading for function and writing for function and for emergency situations.  Math for money and shopping.

Letting him go back to main stream high school was the right thing to do, but scared me to death after having a bad experience in middle school.  I just didn’t want him to get “hurt”.  Quite frankly, I didn’t want me to get hurt either…to go through it all again.

High school has been great.  The kids have been great.  We had some adjustments, but over all it’s been  really good.  The problem now…is me.  I can’t see a kid in a high school football jersey without crying.  CJ has always been a big kid and is so athletic.  He could spiral a football at 4.  He can still throw better than some of the kids who play on the teams.  I also realized that other than a few line backers, he is as big or bigger than the other players.  There is a song called “Boys of Fall.”  I sobbed every time I heard it.  In fact, if I need a good cry, I can still play it.  It is all about what it means to be on a team especially in a small town.  It broke my heart.

One day when CJ was 12, I was talking to S, a friend who also has an autistic son.  She was telling about how her son had been Baker acted twice in the last year.  I just started crying and couldn’t stop.  She was comforting “me” and telling me that it was a good thing and that if we got to that point, there wouldn’t be another choice and it would be a relief.

Until last month, I had no idea how much of a relief it might be.  Last month, we got there.  I, however, did not get that relief.  Yet another moment still waiting to happen.