Tell Me 'Gain

"Tell me 'gain" is Kevin's favorite sentence.  He says it after any affectionate sentence or any comment with his nickname of O'Connor-boy.  Here are a few examples:
"Kevin, you make me proud."
"Tell me 'gain."

"How are you O'Connor-boy?"
"Tell me 'gain."
 
I gave Kevin a book for Christmas last year that enables recording, so he can hear my voice as he turns each page.  But rather than read the story, I inserted catch phrases that I knew would make him happy.  On page two, I recorded, "This mama bear loves her baby and I love my O'Connor-boy."  After listening to page two, he always says "Tell me 'gain." He will always ask in multiples, so a typical conversation is:
"I love you Kevin."
"Tell me 'gain."
"I love you Kevin."
"Tell me 'gain."
"I love you Kevin."
"Tell me 'gain."
"I love you Kevin."
I need to re-record the book so I pause to give Kevin time for his response and then I will repeat the phrase twice more.  He usually says it three times, unless he is especially happy and then he may go for four or five rounds.

Recently I met Kevin at his doctor's appointment and the staff person from Kevin's group home told me that Family Feud is his new favorite TV program.  And that every time the host says, "Survey says!" Kevin responds ,"Tell me 'gain." 

United We Wait

     I'm a travel pro.  I fly on 5-10 airplanes a month. I arrive at the airport less than an hour before my flight and feel good about it.  I wear loafers, just like George Clooney in "Up in the Air" so I don't have to bother with laces after the security screening.
     Nothing prepared me for Monday.  I know Monday departures from Newark are not ideal - all those business people (oh wait, that's me) lining up to start their weeks in some other city.  With a lot on my agenda in St. Louis this week, I just had to leave on the 9AM flight.  Or so I thought.
     After posting delays to 9:30, 10:15, 11:00 and 12:30, United cancelled the flight due to mechanical difficulties.  We shuffled our way to the customer service counter, which is a euphemism for "stand in line."  Twenty minutes later I received my wait-list slip for the 1:30 flight, departing from a different terminal.  Thankfully I am gold status, otherwise I would still be stand in the looping corral queue in Terminal A.
     As I approached the gate for the 1:30 flight, I saw it was delayed until 2:00.  Ominous.  At least I received the good news that I had a seat.  We boarded the plane and sat for 30 minutes until the announcement came that this flight was also having mechanical difficulties.  Leaving our gate-checked bags behind, we re-entered the terminal to wait it out.
     The 4:45 flight left while my bags were still held hostage on the broken plane.  At 5:45, the gate agent informed us a new plane was being sent over to take us to St. Louis.  At 6:30PM, we took off.  I received a coupon for 10% off a future United flight, which didn't seem quite adequate for a ten hour wait in an airport.
     This coming Monday I will give United a chance to redeem themselves.  Same flight.  Hopefully not the same result.

Tuesday, Tuesday

     Today was a tough day.  Too many meetings, too many issues, too many calls.  On my way home, while fielding one last call from a co-worker, I heard the beep indicating another call was coming through on my Blackberry.  It was Kevin's group home calling.  Then, they called again two minutes later.  I knew it would be another report of Kevin misbehaving and asking me to talk to him to calm him down.  After my work call was done, I called Kevin's house, my nerves about to implode.
     "Oh hi.  Kevin just wanted to talk to you,' said one of the staff in a cheery soprano voice.
     Kevin got on the phone and with some prompting from the staff person, told me about his trip to Dunkin Donuts that he was about to take because he had a good day.
    And I relaxed and took a deep breath, reflecting that sometimes its all about the coffee and donut at the end of the day.

Two Good Days

     It's been a few months now that Kevin has been acting out at his group home and his workshop.  The frustration of not being able to decipher what is wrong is palpable in me and in the staff.  I know that I want to throw things across the room every once in a while, but I can hold back the urge.  Kevin can't.  He punches the air and sometimes his fists collide with other people.  I worry about their safety, I worry about Kevin's peace of mind.  Just what is going on inside that brain of his - the one that knows all his colors, but can't tell the difference between the numbers 2 and 3?  I've asked dozens of questions in a myriad different ways to try to ascertain what is wrong.  The answer is always, "nuttin."
     His misbehavior started on weekends and spread to the weekdays, even manifesting itself with his favorite staff.  Now, finally, things seem to be reversing a little.  He's having good days during the week again. Is it the reward system of giving him a daily star for achievement of each of four criteria (not hitting, keeping his hands to himself, good manners and another that I can't remember) or the introduction of a new medication?  Is it the dinner he had last week with Vinnie, his favorite staff member, who left the group home a few months ago?  Or is it a combination of all of the above?  I long for a graph, a chart, some analysis that tells me the exact proportion of factors to pull together to elicit good behavior.  The tough fact is it's trial and error and it always will be.
     Upon hearing the news that he had two good days, yesterday and today, I felt relief fill me, revealing to me again how much I worry about him.  I try to remember that I am not in this alone.  My older brother and his family, the group home managers, the workshop team, his case manager - all these people want a happy and healthy Kevin.
     Tonight, as I was saying good night to Kevin on the phone, the staff member was egging him on from his end, reminding him to say good night.  Then she said, "Tell Sissa you'll talk to her tomorrow."
     And Kevin said, "Good night Sissa.  Me talk about you tomorrow."
     It's moments like this that make it all worth it.

Lives Well Lived

     I have attended two funerals in the last week for parents of friends.  One was a father who died suddenly.  The second was a mother whose death was expected after a brief illness.  Having lost both my parents, I know the pain of this loss, the memories that sweep over you like waves in the ocean, the worry about a surviving parent who is overcome with grief.  I see in both these families the love that will carry them through these times.  I see the upbringing by the parents they have lost reflected in my friends' actions, their gentle nature, their kindness and strength.  There is no better tribute.
    

A Different Kind of Christmas

Last year Christmas was a prolonged and festive occasion, with my older brother Jim and his family from Maryland, plus Kevin and Vinny.  It was a reunion after many years of not being together on Christmas.  This year, many factors will make it a more mellow holiday.  Jim and his family won't be able to come to New Jersey.  It's the first Christmas for us without Vinny's Mom.  Neither of us felt like getting a tree (or decorating it) so we are abstaining. But it's okay because the most important part of Christmas exists no matter what is happening in our lives.

There's a part of Christmas that has always been about Kevin for me.  He's our perpetual child, always excited by presents of screwdrivers and coloring books and turned off by socks.  He lights up the morning with his gratitude for something as simple as a box of pens.

But Christmas isn't about Kevin. And I'm aware of a deeper meaning to Christmas this year.

I am so thankful to have a more palpable faith in God.  I have worked to get there, focusing on my relationship with Him.  But I know that much of my connection with God is a result of grace - God's grace, that I have not earned and could never repay.  I've tried to pass it on a little bit, by participating more in food and coat drives, keeping the focus off myself, which isn't always easy.  But I know that the most important thing for me to remember this year is God's gift to me of his Son.

Merry Christmas!

Sanksgimmin

That's how Kevin says Thanksgiving.  He knows it is the day when we eat turkey, stuffing and cranberry sauce.  He knows we go to "people's houses."  He doesn't know about pilgrims or Indians.  But he does know how to spread gratitude.

This year, Kevin, Vinny and I are spending the weekend on Long Island and it's the longest I've spent with Kevin in a while.  I was a little nervous initially about the three of us being together for four days.  Kevin has not been himself on our last few visits, shaking is fist and grabbing my shirt if he is not getting his way.  He has also looked at us several time as though he doesn't understand what we are saying.

But  things are different this weekend.  He's bubbling over with excitement for each activity that we do.  He has told me a dozen or so times a day that he loves me.  He and Vinny are joking with each other, usually at my expense.  It is a great relief to see him back to normal.

And it appears that the answer to his behavior issues may have been something very simple.  He had a lot of wax in his ears.  It must have been uncomfortable for him and the doctor said he could barely hear out of his right ear.  Something so simple that created such a difference in him.  As with most of his physical symptoms, he couldn't verbalize what he was feeling, but it had to come out in some way.

So this Sanksgimmin, I am grateful that Kevin is rubbing his hands together and giggling, a sign that he is ecstatic about what's about to happen. I am grateful for the vanilla ice cream with chocolate sauce at dinner tonight - Kevin's favorite treat. I am grateful that Vinny loves and accepts Kevin as readily as I do.  I am blessed.