I have been writing and re-writing as I try to make sense of Friday’s killings.  I will not post what I’ve written, but this morning a Facebook friend posted a link to a petition calling for common gun control.  Almost immediately those commenting began to argue, and after days of anger, fury and sadness, I was able to articulate this:

“There are those who will fight for their "right" to own and use what one commentator referred to as "formidable killing machine(s) eschewed by most hunters, unwieldy for self-defense, similar to weapons used by our soldiers in Afghanistan and the weapon of choice of the Beltway snipers."  Their voices have dominated the discussion to regulate and ban fire arms.  Those of us who have a different vision of our children's future must commit to change, stand behind our President as he engages in discussion and become the majority needed to move our policy makers  beyond the influence of the NRA and weapon enthusiasts.  Simply put, we must be the change.  As for me, I care for my children and the children of my larger community too deeply to do otherwise.”

I went to a parent teacher meeting yesterday.  I cannot help but reflect on the parent teacher meetings that I went to when Cheshire was in grade school.  Meetings during which teachers would gush and praise and during which we never had many questions or expected to discover much that we did not know.  Meeting what sometimes ended with time to spare.

Now I go to parent teacher meetings with questions and worries and apprehension.  Will I hear about inappropriate behavior?  Has Julia begun hitting again?  Is she scratching and bleeding?  Showing her underpants?  And work??

That’s what goes through my head.  Experience does shape outlook.  Is that depressing or realistic?  

Anyway, most of the news was good.  Julia is doing solid second grade work, a bit better in reading.  She is actually in math and reading groups, and is spending all her science time with her science group without much redirection.  Her classroom teacher thinks her behavior has hit new highs, and there are even those two girls who invite her to play with them.  Slow, steady and good progress.  I almost don’t want to dissect it.  Looking at her current IEP, which will be ready to be renewed in February, she has met many of her goals.  I don’t know if it is half but close.  She is, well, really, they are, working on almost all of her goals and feel she is progressing.  Again, this marks a change from the years of not seeing any, or only a few goals progressing or met.  And her classroom teacher tells me that although there are time when transitions can still be a bit dicy -- talking back, sassiness, and a few times when Julia hit her aide on the arm -- what brings her back to her better/more controlled self, is to say that if she cannot act appropriately, she will not be able to stay in the classroom.  And rarely these days, does she get sent out.  

Another thing that her teacher told me was that Julia works hard and does quality work, she does her best.  Sometimes, or perhaps most of the time, that work is modified for her, but she seems to have adopted a very good work ethic.  I saw a “water cycle” poster that she drew in class yesterday.  It was clear that she copied the picture because the style was not her own.  The mountain looked like an illustration, the rain clouds were perfect, and the big curved arrows were where they were suppose to go.  She was one of the few kids who finished in the time allotted.   

There is a lot here to be proud of.  And I was able to breathe a bit easier when I left.  My guard still cannot be dropped.  Maybe one day.

The unfortunate news, which has nothing to do with Julia’s behavior is that the sub who took over when the special ed teacher left will stay until the end of the semester.  And it will be a newly minted special ed teacher who is supposed to be quite good who will take over in January.  Julia’s classroom teacher likes the present sub and she has heard good things about the new teacher.  I have not been able to establish good communication with the sub which is disappointing.  I am just cranky about this.  I know that kids have great teachers, awful teachers, and everything in between and survive.  And learn.  This crabbiness is just my intense pursuit of the best that I can possibly get for Julia.  Always and constantly.  

Having a tough time letting go of the fact that school is not perfect.  I need to lighten up a bit.  Even without a real special ed teacher, Julia is taught and supported.  I have to remember that last year at this time, we were neck deep in dealing with rashes and bug bites and constant and intense scratching.  And we are not there this year.  

Switch.

Recently, it has been difficult for Julia to get up in the morning and get herself going.  I’ve tried lots of things and last week they were all failing and I was just incredibly angry.   Angry at her for not listening, angry at me for my anger which gets us nowhere.  A good conversation with Marilyn got me back on some better track.  I decided to finally use a Love and Logic approach to the morning.  I did a bit of research into the system a few years ago but Julia didn’t seem ready to use it.  Now, I hope that she is.

I told her about it this weekend.  If she doesn’t get dressed on time, we will put clothes in a bag and go downstairs.  She can try to dress downstairs but she must also eat and do that part of getting ready.  If she isn’t ready by the time the bus is due, she will miss the bus.  She will call school and tell them she will be late and why.  I will drive her to school and she will do what she needs to do to catch up in the car.  She will also lose her iPad for the day.  

So Monday went perfectly, today, not so much.  She watched the bus go by and she moaned and groaned about it.  I took the iPad out of her backpack.  She called school Then we walked the dog before I took her to school.  This is sort of a tough love exercise, and it could end up with her getting dressed and eating breakfast in the car which would not be comfortable as the weather gets colder.  I hope I don’t have to repeat it much, but I can’t continue to be completely responsible for getting her out the door.  She needs to find it in herself.  

Can I pray for a better tomorrow?

An unfortunate comment on Facebook -- political, what else? -- led a friend of a friend to tell me that she used to read my blog but stopped years ago.  She didn’t say why but at least right now, she does not like my politics.  I had to think about how much politics was on my blogs -- some, but not an extraordinary amount.  I don’t think.  (Traci, you can correct my impression if I am wrong.)  Rashly, I responded, “Was it death, disability, politics or religion?”  My take on any of those could offend.  I will not check for reply.  I have posted a moderate amount of political stuff on Facebook this election season, and I am sure that I have been “hidden” or “defriended” some.  I have done the same to some of the most rabid right wing political postings.  Conservative viewpoints are just part of the discussion, but the musings of Ann Coulter and Rush Limbaugh, I don’t need to see.  I don’t even disapprove.   Free speech and the like, but I don’t need to entertain it myself.

For a moment, reading that this adoptive mother, stopped reading my blog made me feel badly.  In part of my gut, I want to please. I wanted the sweetness and light of the lovely adoption blogs that I visit from time to time.  Gosh, I hope that some of them are absolutely true.

But they are not my experience.  Hell no!  The last six years have battered and bruised me.  I’ve written unkind things, unfair things, maybe some wrong headed notions, but also truth.  Not universal truth by any means, only my own very fallible truth.  I fail frequently.  I omit some of the uncomfortable.  I write as much of my truth as I can manage.  And so, I should not be surprised that I’ve offended.  Of course, I have.

As long as I am standing high on a soap box, I will be a bit more daring.  The other day, for the first time since David died, I missed physical intimacy.  It has taken 27 months to miss sex.  I’ve miss having a partner in so many other ways, it is almost funny to arrive at this missing.  And I am rather embarrassed by it.  Maybe it took too long, maybe it is still inappropriate.  But there it is.  

A friend who is also a Facebook friend shared this post from an 18 year old who has a long term health issue:  

“Well,I can honestly say my first and most likely LAST election as a legal adult has suck. I don't think I can explain how terrifying this is for me. I don't even care what anyone thinks of the fact that it has brought me to tears. When I say "Obama being president for another term will be the death of me" I mean it literally. When it come to Obama Care,people who have a major illness or a life long illness..such as myself,are pretty much not far from their death bed. Once it takes full affect he will be making those people with a major or life long illness comfortable until they pass because we are too expensive. SO YES,I have a reason to be upset and I have a reason to cry. I already had a time limit on my life and with the help of Obama care it's even shorter. Congrats on your win for a second term. Next time anyone wants to say "Obama cares about everyone" remember people like me,and how we pretty much have a time limit on our lives.”

This young woman was in my thoughts all day yesterday and I could not go without responding with the aim of providing her with some help that she desperately needs:

T has been on my mind since I read your post.  I hope that you will pass this along to her.  I am posting this privately because I don’t need to start another political debate.  It is time to heal.

I am deeply sorry that there is someone or more than one person who is giving her the wrong information about the Affordable Care Act.  As the parent of a child with special health care needs, I have examined the legislation carefully and have also spoken with advocates and lobbyists who specialize in working for the disability community.  With great respect, I feel a need to point out how T is wrong.  The Affordable Care Act will allow T’s parents to keep her on their health insurance until she is 26.  It will allow her parents and eventually T herself to move and/or change jobs and get insurance for her even though she has a serious preexisting condition.  I am assuming here that T is covered by private insurance.  There is no provision of the Act which demands that T or her parents change their health plan or that her health plan will need to change her benefits.

If she is covered by some sort of Medical Assistance and/or long term care assistance, the Affordable Care Act will improve her coverage.  There will be no “death panels” and treatment options will be no more limited than they are now.  At present, insurance policies, private and public, have caps on services and restrictions on treatments.  I don’t believe that the Act will change that, that is, expand caps or restrictions.  Experimental treatments will probably never be covered.

State medical assistance plans and advocacy groups vary widely from state to state, but I hope that T will find an expert, an advocate, or someone who understands benefits for people who are disabled and have a serious conversation with them.  I urge her not to depend on the rhetoric of the extreme conservatives who have dominated the conversation but to seek out moderate voices for information and help.

Here are a few websites and articles to get T stared:

http://specialneedsplanning.net/2012/07/what-obamacare-really-does-for-individuals-with-disabilities/

http://www.huffingtonpost.com/carla-lohr/health-care-law-disabled-people_b_1636159.html

http://www.care2.com/causes/kids-adults-disabilities-fear-less-scotus-aca.html

Also, if she looks on the National Disability Rights Network (http://www.napas.org) about half way down the page, under Latest News, there is a downloadable pamphlet/guild entitled “How does the Affordable Care Act affect people with disabilities?”  It is good reading, a bit dense but with lots of answers.

I’ve also given your comment about the passion of liberals a good amount of thought.  Why do I have a passion to extend the civil rights that we, as able, straight Americans take for granted to people who experience life differently than I do?  I guess because I can.  T’s desperation and fear is exactly what is wrong, of course in my opinion, with current conservative thought -- prey on the weak, scare them to death and fill them with fear and hate for people who are trying to solve problems.  That’s what Rush Limbaugh, Sarah Palin and Ann Coulter sound like to me.  

I know you are conservative and I’ve worked and played with conservatives, but it is the current crop of radical conservatives that keep me as far left of the conservative ideology as  I can get.  I hope the the most recent election causes an earthquake in the Republican party and that moderate Republicans take back their birthright.  Then, the discussions about solving problems can begin again.