Monday, April 29, 2013

9 Years

Last week was the 9th anniversary of Connor's diagnosis. I usually don't remember it until after the fact, as it's followed by my sister-in-law's birthday and my best friend's birthday. Then I remember. I remember taking him for his EEG, not realizing that test was going to send the train of my life off onto a siderail course I could never have anticipated. I wrote a piece on that day almost 2 years ago. It's long so I won't put it here but it details the day. I read it often. I don't want to forget what the beginning was like. It is good for me to see, all these years later, that we were scared adults in an ocean of long, scary words and questionable longevity, and see where we are now. We are stronger because he is. We are a larger family because we believed we could be.

I had a check-up today with one of Connor's specialists today. Really, we only see him once a year, and every time, he makes a point of saying how hard he can see that we all work in this family towards the best possible outcomes for Connor.

He's a good doctor. I am glad to know him, even as I am angry that we need to. I am glad that he believes in us. We were referred to him to work on feeding and aspiration issues. The idea came up in 2008 to install a feeding tube in his abdomen. We were against it. This doctor is too. In 2013, Connor has had a feeding tube for exactly no days ever.

Leaving his office, I was struck by a thought while I raced him to the car through the rain. They can tell me he's going to die as an infant. They can tell me he has to have a feeding tube. They can tell me many things. It doesn't matter. They can't have Connor. He's mine, and he fights like we do, and we are never, ever giving up fighting for him. Never.

Thursday, April 18, 2013

More on Glee and how it mishandled last week's episode

I've had some additional thoughts that I wanted to get down before they escaped me. What really bothered me, after a little reflection, is that Glee had a chance to take on the gargantuan topic of how we handle students and other individuals who are special needs when they "age out". It would have likely been simplified, but at least it could have started a dialogue about it amongst their viewers about what we do as a citizenry. Instead, they cheapened a character who is truly in a class of her own, and rendered their advertisements of the episode handling shooters in school toothless.

My son receives a lot of services. I probably couldn't account for them all as they have been with us for so long I don't even notice them anymore. I am grateful every single day that we have support for things like his therapies, his durable medical equipment pieces, even his medications. He's had somewhat underwritten therapy since the week after he was diagnosed. It can take a lot to fight for his DMEs, but we fight and we get them, eventually. Our various health insurance carriers have worked with us regarding his medications, and we have Medicaid to cover him when insurance won't cover it.

Yet, when we were informed that we had to go to court when he turns 18 (assuming he gets there) to have him declared incompetent so that we could retain guardianship over him it was a shock. Hadn't occurred at all. That was a rough meeting. Connor's personality is subtle, so I cannot imagine what it's like for a parent of a vivacious, loving DS child having to consider what will happen once their son or daughter won't have school to attend? When their friends go away to college?

Families with DS children are my heroes. They handle so much more than I do. To see them diminished by this program makes me angry, energized, and bloggy.

So thank you for reading my thoughts. There may be more to come, but that is all for tonight.

Glee and Guns and Schools and Mental Health and all of it

So I've had a few ideas in my head that I wanted to write about recently here on the blog, but they all got knocked aside last night.  Sunday night, a virus raged through the family, sparing no one and laughing maniacally at me as I lay crumpled on the floor in the bathroom, just to save Lee from having to wake up to me getting up AGAIN.  Monday dawned, and the virus retreated, but not before depleting me in a way I have no been since I hiked three hours in the mountains of Guatemala along centuries-old pathways on what was described as a "gentle walk" but really reflected something akin to 7000+ feet of elevation covered without water, food, and almost breaks.  But I digress.

So last night I was still in recovery mode, plopped on the sofa and plodding through my shows - my Stories! - on the DVR.  First up, the rest of the Community from last week.  Then Parks & Recreation.  Laugh, laugh, laugh!  Then I started in on Glee.

To be honest, I have watched Glee since season 1, and the first season was really well done.  The second season started poorly, and then improved.  It had one standout episode that I now judge all the other episodes by (and no, I'm not talking about the episode with "Teenage Dream" though that is my favorite song they've done because the arrangement is freaking amazing).  The third season was really quite bad.  This season I wanted to see what would happen when many of their mainline players had graduated.  The dreaded 90210 syndrome.  What do you do when your stars age out of your show by your show's very premise?

The episode started like many others, fun, frothy, weird, musical number, GLEE namecard.  As an hourlong program, you can rely on First Act - setup & music, Second Act - action & music, Third Act - action, occasional twist, & music, and Final Act - moral of the story, frequently told  The other "good" episode featured a big SHOCK in the second Act, and so did last night.  Last night, at the beginning of the second Act, the kids gathered in the Choir Room and were starting to get ready for their "lesson" when shots were heard in the hallway.  This has been a topic of much discussion in preceding months, of course, but as it turns out, imagining it and watching it are two very different things.  I felt pushed down into the sofa, and I watched these non-kids do truly wonderful acting as terribly, horribly frightened children in a dark classroom trying to keep it together.  All I could think about was "Oh God, my little babies...they would be so scared..." mixed together with the out-of-body commentary as to who is doing a good job and who wasn't.  Our favorite, Brittany, crouched on a toilet seat with her hands bracing her in the stall, and tears running down her face and dropping into the toilet below her - possibly the most convincing thing she has done on the show.  Teachers, quietly as possible, hauling someone who wants to be a hero into a smaller interior room whispering to him that he is endangering everyone there with him. 

It was a nightmare and I could not stop watching.  Coupled by the fact that I managed to watch it hours after the Senate failed to pass any kind of gun reform made it extra nightmarish.  Lee came in while I was mid-Act and wondered why I was sitting on the couch crying about Glee.  Fair question.

And then.  THEN.  Then they took what was so promising, turned it over, and ended it in a way I'm sure the showrunners thought was Noble and Important and Sent A Message.  Well, FAIL, idiots.

There was no one shooting at people in the school.  Instead, the truth of the story is that a scared student (and recurring character) who has Down Syndrome had brought her father's gun to school because she is close to aging out of school and she is scared about the future and wanted to protect herself.  She dropped it while trying to hand it to her teacher and mentor while explaining and her fear, and the drop caused it to fire.  WHAT?  So, instead of really addressing the issue of person to person violence and the ability to purchase weapons without background checks, or steal weapons from people (parents), suddenly this show is saying, "Developmentally disabled kids do things like this."  OH. MY. GOD.

I was incensed.  I remember being a teenager.  Even while learning (and I learned well) I still had foolish black-and-white opinions about things that I have completely reversed with maturity, higher education, living, and common sense.  No teenager has maturity, higher education, living and common sense at their disposal.  They have Ideas.  They have Hormones.  They have Opinions.  I did.  I wasn't all that atypical.  And now, maybe some of them (the show is, after all, geared towards young adults) think that developmentally disabled children mainstreamed into public schools can't be trusted to not do something like bring a gun into school. 

I recognize that I have a filter that not many other people have on this.  But seriously, blame the kid who isn't like the others?  That is just sloppy, lazy, thoughtless storytelling.

It is hard enough for our kids to be mainstreamed into schools.  Connor sort-of is, and at first I feared daily for him.  Not because I feared violence, but because I feared that he would be teased.  I worry that his brothers will be teased for having a disabled brother, as if that was something they caused.  Connor's school has it's strengths and it's weaknesses, but one thing I have noted and become more comfortable with is that the students embrace him and his classmates wholeheartedly.  A few years ago, the younger sister of a schoolmate (not a classmate - someone else who goes to the same school, that's all) made him a valentine because she saw him every day at drop off.  When her mother asked her who she wanted to make cards for, he was in her list.  I got the card and cried like a baby.  I emailed her mother and thanked her profusely for the card and told her how wonderful her little daughter was.  Kids are pretty nice.  Teenagers are still unknown to me at this point.  They were mean sometimes when I was a teenager.  I was mean sometimes as a teenager. 

Glee, I may be done with you once and for all now.  You have taken a show about keeping the arts in education, and how creative teenagers are put down and bullied at school, and turned it into a personal soapbox were the soap now muddies your own messages.  You just left it there - she did it, no one knows but the teacher who covered for her and lost her job as a result, and left a terrible taste in my mouth about how you handle members of the special needs community.  Up until now, you have been an ally of the special needs community, but I think you did all of us an enormous disservice with the episode "Shooting Stars". 

Wednesday, April 10, 2013


So last night (okay, okay, this morning when I fell back asleep when I should have been up!) I dreamt about Connor.  I do not usually dream about him, but when I do it's a very uplifting experience. 

Last night/this morning's dream centered around him sitting in Tucker's room.  Tucker was playing with him, throwing stuffed animals around for him to track.  All of the sudden, Connor broke out into the most enormous smile I have ever seen.  He laughed and laughed and laughed.  I ran in to the room and grabbed the only camera I could find, which was the toy one Tucker got for Chirstmas, which has an approximate pixel setup of 1 pixel by 1 pixel.  But I was determined to get a picture of this event. 

I woke up happy, and wishing I really had the picture.

Back 4 years ago, as I waited for Tucker to be born while living in Tiny House, I dreamt that Connor came walking, almost running, out of the screened porch, across the yard and into the street.  Nothing bad happened.  He was just moving, and looking amazed with himself.  It seemed, in the dream, that he knew he could walk all along and he just decided to do it.  There he went! It was fantastic.  I woke up so happy that day too.  I love that in my dreams, when he does stuff, it's the things we all wish he could do, and that doing them makes him so happy.

I don't really remember dreaming about the other boys.  Perhaps that's because they get to live out the dreams all around me.  But given the strange dreams I've had through my whole life (Jerry Garcia as Lamaze instructor, anyone?) these are the ones I cherish the most, and will keep record of for those days when I need a pick me up.  I didn't need one today, but who knows when the next day will come when I do?

Take care out there, friends.  Let your dreams fly, and try to live them.