Julie’s News from Maryland

Nicholas has completed his first full week of school at Kennedy Krieger.  He goes back and forth between loving it and hating it, but he seems to consistently like his teacher and is building a strong bond with her.  He also seems to like the other staff members and is overall positive about the experience.

He is, however, pretty annoyed that he has to go there at all. On our way home from school the first day he told me that he wants to be a regular kid and go to a regular school.  He and I had a good conversation about that and I think I helped him feel better about himself.  But it breaks my heart  every time I hear him say it.  More than once this week he has asked me why he has to have anger issues.  He knows that this isn’t the most common experience for kids and he doesn’t want his life to be this way.  I don’t want his life to be this way either.  And it totally sucks that I’m completely powerless to change it.

I know that we are getting the best care for him that we can.  For pete’s sake we are at one of the most advanced research centers for this sort of thing - he couldn’t be getting better treatment.  I’m working hard to learn about him and what he needs and how to make his life better.  But it doesn’t change the fact that it just sucks to have to do it this way.  

I love that little boy so much.  I have so much confidence that God loves him too.  I know deep down that it will be ok - whatever that ends up being.  But I think we’re all doing a little grieving right now.

The bus is now picking Nicholas up and taking him to school every morning; at 6:45am.  We were originally told that the bus would arrive at 6:30, so the first few days we were dressed and waiting outside by 6:30.  When the bus consistently arrived at 6:45, I checked with the bus driver and he confirmed that 6:45 would be the regular time.

On those first few days as we were waiting, I was very aware of each bus that traveled past and near our house.  I counted 7 other buses between 6:30 and 6:45.  As I watched this elaborate system of buses, each traveling the same route at pretty much exactly the same time each day, I was just amazed by it.  It occurred to me how so incredibly lucky we are to live here in this place in this time.  We live in a country where the state and the federal government employ people to get out of bed ridiculously early, to drive safe and well maintained buses, to pick up children wherever they are, to take them to school where they get to learn for free.  How unbelievable is that?

How many kids around the world don’t go to school simply because they live too far away to get to the nearest school?  How many kids around the world get on a bus that only comes sporadically because the driver is a volunteer and can’t always be there?  How many buses are poorly maintained and are dangerous, but kids are willing to take the risk just so that they have some shot at an education?  And what about the places where kids don’t go to school because they are too preoccupied with finding food and water to survive each day? 

Maybe I’m being overdramatic.  Maybe it’s not that bad.  But, I have a feeling that it is that bad.  And as I watched these buses faithfully on their journeys each morning this week I was deeply grateful for the life that my kids get to have here.

One of my parishioners told me that she was recently driving along when her preschool aged daughter from her car seat in the back said aloud:

“Christ has died. Christ is ribbon.  Christ will come again.”

They’re listening. They might not have any clue what we are actually saying, but they are listening.

Today we took Nicholas to Kennedy Krieger for a tour of the elementary school.  It is quite an impressive facility.  All of the “special” classrooms (music, art, computers, etc) have state-of-the-art equipment.  They have a special “calm” room that kids can use whenever they need a little break and want to relax - it has a bean bag, a column full of water and bubbles that has a light to change colors, a sound system if they want to listen to some calming music.  Nicholas was very excited about that and is hoping to spend some time there. 

They have a huge staff.  They have “crisis intervention” rooms where the crisis management team can take kids who are having a tough time and need help getting calm.  They have tons of social workers and psychologists and behavior specialists and nurses.  They even have a psychiatrist and the principal mentioned that the psychiatrist on staff at the school could be the primary doctor for Nicholas, dispensing his meds and helping to determine what might work best for him.  That would consolidate his care in one place, which would be great.  I’m hoping to meet with the psychiatrist on Friday.

Speaking of Friday, Nicholas will be spending the day in a classroom on Friday.  If the class seems like a good fit, then we will get a start date.  I’m hoping that will be soon.  Nicholas is quite lonely and missing being with other kids.

Walking through the school today was very hard.  Some of the kids there are very visibly disabled - not physically so much as emotionally and intellectually.  Some of them face huge challenges that I can’t even imagine.  I thought about their families and how hard it must be for each of them.  And I thought about my sweet, sweet little boy.  He is so charming and so funny and so wonderful.  I’m so sad that he is suffering so much and having such a hard time.  I just want him to be able to go to school like every other kid and just have friends.  I’m sad that he has to go to such a special school because he has such a hard time.  It is hard to stand in the reality that my child really does need that much help.

I’m so grateful that we are here in Maryland.  I’m so grateful for this team of people that will be helping him.  The principal and the other team members that we met today were thoughtful and helpful and listened so carefully to Nicholas and to us.  After they finished interviewing Nicholas and he had left the room, the principal and the other team members remarked about how charming and funny he is and how polite and well mannered he is as well.  Then the principal said, “It must have been really hard for you to see him suffer so much.”  It was so amazing to hear that - to have someone acknowledge right away how hard it is for us to witness Nicholas’ disabilities.

So, onward we go.  One day at a time.  It’s a marathon, not a sprint.