Thursday, October 7, 2010

"A life in the community for everyone"

That is SAMHSA's vision, and the tagline is oft repeated on their site and on their deliverables. "A life in the community for everyone." Sekai wanted a life in the community. He wanted a life at home with his family. The SAMHSA vision is specifically about individuals who have or who are at risk for mental health or substance abuse disorders, but the thought could appropriately be applied to children with other disabilities and children in foster care. Tomorrow, SAMHSA is holding an Open House to publicly discuss their Strategic Initiatives. Happy birthday, my darling boy.

Wednesday, September 29, 2010

Esme

I have not been posting as often as I would like. I am still writing, just not posting. I think somewhere along the line I went from posting my thoughts as they occurred to me, even on my handheld, to waiting until I could get to a computer and sit and think and edit. The problem with that of course is that I have some five or six--or more--posts in various stages of completion that need to be posted. So I am going to try to just write. Anyway...

I am starting a new job. Yay! I am quite excited about the job and very grateful, especially with the current state of employment and economic troubles. Though I am excited, I am also a bit nervous. I have yet to meet my boss or see where I will be working, and little things like that can be unnerving to me. It isn't that I'm concerned about the work environment--I've spoken to my boss on the phone and emailed with her, and she is very nice. It is just that the unknown can be unnerving. At least to me. And I start the job next week. So here is where it gets a little more challenging: I start work on Monday; Sekai's birthday is Friday. I had planned to more or less shut down. But that was before I had a job. (I have a job. A really good job. Did I mention that? Yay!)

I was speaking with my mother this morning about whether to contact my boss in advance to ensure that I can take off on Friday (the hiring/contracting agent has said that she doesn't think that I will be a problem), and just talking about my questions. She asked, I answered, I asked, she answered, and then she said we could talk more later, and then she left for work. Minutes later, she came back in and said, "It's ok to be nervous. A lot of people are nervous about starting a new job, and that's ok. It's ok to be nervous about this." She didn't add, "but you'll be fine", or "just calm down", or any of those platitudes that can feel like salt in a wound to someone who is working through something. Suddenly, I just felt so much better. I felt heard. I felt validated. Isn't that what we all want?

For obvious reasons, I started to think about the times that Sekai had expressed his emotions, and the times that I wish now I had responded differently. I know, I know, the coulda, woulda, shouldas can be dangerous territory; I try not to park in that neighborhood often. This time, though, I suddenly had a good memory, a reminder of a time when I was able to respond swiftly to Sekai's needs and meet them well.

Sekai used a powerchair for mobility. When we first moved into our new apartment, he did circles in his room. When I asked him why, he responded, "because I can". Indeed, in all of his 11 years away from our home, he had never been able to move himself in his own bedroom. His foster family didn't allow him to bring his manual chair beyond the threshold of their house, and the powerchair was always kept at school during the school year, and put in storage over the summer vacation. Sekai could access our entire home in his powerchair. At the time, though, we were dependent on the school to transport his powerchair to school. The physical therapist had someone pick up the chair, and he had to ride to school in his manual chair, and then be transferred once he arrived at school. This had been the arrangement at his foster home for years. Without transportation in place during those first early weeks, however, we would be unable to get his powerchair back home for the weekends. Sekai was vexed about being without his mobility, and spoke quite a bit about this, talking about having his freedom taken away again. That week, I spent hours online, searching for a ramp van. Previously, my mom, Sekai, and I had gone to dealers to look, but they are quite expensive, and working within the system to get the assistance Sekai was entitled to for covering the cost of the van would likely take a long, long time. (And yes, of course they reminded me that his foster family had never bought a ramp van, as if this was an indictment of me, or that I was somehow being frivolous by wanting to provide my son with his mobility and freedom. Sigh.) So I spent that week online. That Saturday, we went to visit a man who was selling his ramp van because he had been approved for an upgrade. The van showed some wear-and-tear, including the giant scrape on the side of the van that resulted when the handgears stopped working (the reason for getting the upgrade), but since I don't require adaptive equipment to drive, and the ramp worked just fine, the van was good for us. We agreed to buy it. That Monday, the seller and his friend delivered the van to us at our local service station. The service station did the inspection, and I then rushed to the motor vehicle administration office. We were on the road, with valid tags, that is, tags that were real, that said the van belonged to us. Like Sekai's feelings. They were real. They belonged to him. Like our feelings. They are real. They belong to us. How wonderful it was to be able to basically say to him, I recognize that your feelings are real, they belong to you, that they express a need, and I can commit to meeting that need.

I call my vehicle Big Red (I've had her since before Sekai came home), so it seemed fitting that the van should also have a color-based name. Big Green didn't really have a ring to it. So we called her Esme, short for Esmeralda. I said she was Sekai's van. Sekai corrected me, "No mom, she's our van." When I pointed out that I bought it for him, he still continued, "Esme belongs to both of us. We're a family." And he was right.



PS-Our dear friends own the van now, and they have renamed her, bestowing a name that is an amalgamation of my name and Sekai's.

Wednesday, August 25, 2010

Dear students

I am aware that at least two of my friends and colleagues use my blog in their university courses. One teaches special education, and the other teaches human development. I may use it in my course this semester as well. If you are a pre-professional, post-secondary student who is reading this blog, even if only because your professor has told you to do so, welcome to my world.

In the past, I actually began my introduction on the first day of class with the phrase welcome to my world. I explained to my Introduction to Special Education students that the field composed a large part of my professional life, but also my personal life. I would tell the students that one of my goddaughters and a few family friends have cerebral palsy, and that a number of my friends and family have other special needs. Then I would tell them about my son, Sekai, a child for whom excerpts of his life story could be used as anecdotes in teaching all but 3 of the 18 chapters in our textbook. When I last taught this class, in the spring of 2009, my students learned a great deal about special education through my eyes as Sekai's mother, and through what he would tell me to tell them. The quote on the header for this blog is what he told me to tell them when he could not come to do his guest lecture after all because he was in the hospital. This fall, I will be teaching this course for the first time since his passing. Now there is one more chapter, "Transition and Adulthood", that I will not be illustrating through a story from Sekai's life. OK, yes, it is true that he had a transition plan in his IEP, but the truth is that he had a transition plan of his own, and will never make it to adulthood. I am grateful to have a guest lecturer for that content this semester. To say that I take this subject matter seriously is an understatement, but I am sure that by now you get my point. Now, let me leave you with a few more points.

First, please keep in mind that Sekai was first and foremost a child, just like the children that you will provide with education, special education or related services, medical care, child welfare services, or any other care for that matter, are children first and foremost. Being young human beings is not the same as being miniature adults, and there is little if any true power in their position. The challenges that many of these children face due to situational vulnerabilities are challenges that have been created by others and put on them, not challenges that they have created to put on you. Disability, especially when viewed through the lens of social construction, can also be considered situational, but this is not to grant you or anyone the license to assign blame or prescribe guilt to parents whose children have disabilities. If at any point you find yourself blaming a child for the challenging behavior that the child is presenting at the moment, please be cognizant and attuned enough to recognize that not only does that child need help (e.g., with expressing feelings, needs, or concerns; coping with intense feelings, needs, or concerns), but you may also need help in order to gain or regain the appropriate perspective. If at any point you find yourself blaming a child's parents, please reread the sentence above, replacing the word child with the word parent, and keep in mind that though parents are (often) adults, we may also need help. I would also like to add something that invokes glass houses or miles and shoes, but I think you get my point so I will leave that alone for now.

Secondly, please keep in mind that Sekai was also a spirit, as are the children whom you will one day serve. This is not the same as saying that he had spirit--and oh he did, let me tell you!--but rather I say this to make the point that some of his wisdom was beyond his years, and therefore difficult for some to comprehend. Are you familiar with the term old soul? It is a cultural reference, often used in the southeastern region of the U.S., and amongst persons of the African Diaspora. The term is used to describe a person, usually a child, who seems to have wisdom beyond that which could typically be obtained by a person who has been on Earth for however many years that child has been alive. Without delving into theology, let me simply quote Pierre Teilhard de Chardin to more fully illuminate this second point: "We are not human beings having a spiritual experience; we are spiritual beings having a human experience." To play with the semantics a bit, Sekai also had a spirit--which is still not the same as saying he had spirit, which he did, abundantly--as do the children that you will teach, a spirit that can be broken if mishandled. Please be mindful, then, that what you say and do to and about the children that are put in your care has the potential to either build them up in positive ways, or break their spirits in ways that you may not even realize. These ways may seem beyond your scope of concern if that child, like Sekai did, looks back at how you continued to live your seemingly happy-go-lucky life while he ruminated in whatever hurtful space was created by a negative word or misplaced term, the lack of concern only serving to reify and reaffirm the negative feelings. Please be mindful that certain words and actions are to the spirit what sticks and stones are to the body.

Lastly, please recall that Sekai had great spirit! Read the light points of the birthday memories post, or about his appreciation for chicken nuggets and reality tv for a glimpse of just how fun and funny he could be, this dear boy whose name means full of laughter. The children whose lives you will touch also have great spirit! I punctuated that sentence with an exclamation point because I want you to be excited about the possibilities! Each one of these young people who are presented to you for your support, assistance, encouragement, or who otherwise present you with an opportunity to fulfill your mission here and to contribute to the beauty of life on Earth has a personality, likes, dislikes, talents, gifts, hopes, and dreams. Each one of the children who are put in your path has the ability to introduce you to reasons to smile, and yes, perhaps reason to cry, but trust me when I say that no matter how physically, cognitively, or emotionally involved that child appears to be, no matter how distant or unconcerned that adolescent appears to be, that child, like Sekai, wants you to smile when you think of them, and when you interact with them. Each one, like Sekai, wants to know that you will remember them.

Have a wonderful semester. Be a wonderful student. Prepare to be a wonderful professional.

Feel free to post comments; in fact, please do post comments.

And remember Sekai.

Tuesday, July 13, 2010

Empty hand

I haven't posted in a while. Not that I haven't been writing. I have notes everywhere: in my phone, on the computer, on the backs of receipts, in various notebooks. I've been writing, or almost writing. Putting thoughts in words, but not refining. This I'm going to go ahead and write out, refined or not, just to get it out there.

Today is my birthday. Just like holidays are hard now, my birthday is very hard. I think my birthday is worse. When he came back, Sekai hated celebrating anybody's birthday. He said it reminded him that his birthday wasn't celebrated at the foster home when he was away.

I celebrated this weekend, and actually had a really good time. Then Monday, the tears came. The anger. The sadness. It wasn't until last night, well, this morning, a few minutes after midnight, when someone posted a birthday greeting to my Facebook page that it sort of clicked for me. It was officially my birthday. I had lived 13 months past my son in real time, and lived 22 years more in my life than he ever would in his life. And that hurt. Terribly.

This morning I was cheered up by the multitude of well-wishes through cards, Facebook messages, text messages, phone calls, and emails. My friends and family made a point to recognize me on this day, and the feeling was overwhelmingly warm. My mother even took the day off to be with me on my birthday. We planned to go to lunch. Then I suggested that we also try to see a movie. I had heard the new Karate Kid was supposed to be good.

[Spoiler alert] A few minutes into the film, I wanted to leave. The male child lead character in the movie is sad and fearful for much of the movie. This saddened me. He is beat up by other children, brutally beat up. This saddened me. The other children are encouraged to be brutal by their teacher, in what I could only process in my mind as child abuse: corrupting, embittering, taunting, even striking children for the purpose of making them fight each other. This saddened and angered me. Repeatedly, I wanted to leave the movie, but I didn't want to upset my mother who was doing all she could to make me happy on my birthday. And I wanted to see the movie turn around, to see the redemption. Before I could get to that place, the male lead character/positive male teacher is shown in a full on crisis of the heart. Before he even answered the question posed to him, I knew the answer. When he responded, "It is June 8", I almost screamed out loud. I wanted to leave. Right then. But I was afraid that if I stood up, the wails would also stand up, and that would be just too much for everyone. So I sat there. And waited for the redemption.

And for those of us who remember the original, or who have ever seen a "good versus evil" movie, we know the redemption comes in the end when the underdog triumphs. In Western culture, we seem to like stories of underdogs rising up and beating the meanies at their own games. My mind, though, kept going to Sekai. Sekai, who could out-talk and even out-whit his enemies, but could not physically escape them. I thought of the time a classmate yelled at him after the teacher moved Sekai in his wheelchair in front of the other student in line. The other student was physically imposing by grown man standards, and knowing he could not get away from him, Sekai began crying in the cafeteria, in front of everyone. When he came back home, Sekai was enrolled in a middle school in the new district; I was concerned, but he was happy, saying that he did not ever want to go to high school again. Sekai died the week before his second graduation from middle school, and I could not help but wonder if he had high school, among other things, on his mind.

Just as he could not escape the bully at school, or being promoted to high school, he also seemingly could not escape foster care, and the corrupted, embittered, taunting meanies and bullies there. Watching the teacher on the screen who taught his students to hurt others, I could not help but think of how we as parents put our trust into people and systems that are supposed to care for children, and how easily that trust can be broken. The students in the movie believed what their teacher was telling them, until they realized the losses they faced as a result. Sekai believed what his teachers, foster parents, social workers, judges, therapists, attorneys, and others were telling him, until he realized the losses he faced as a result. No kicks, blocks, or spins could help him. He didn't see himself as the underdog who would get redemption.

So he wanted to leave. Right then. And the wails stood up. And it was often just too much for everyone. And still I sit here. And wait for the redemption.



[PS-Karate is translated as "empty hand". Sigh.]
[PPS-I learned at a recent conference that bereavement, particularly loss of a child, forever changes one's perspective. I concur.]