Life – It’s Been A While Since I Posted.

Oh, I hope I’m not about to alienate all of my followers!!

This is one of those crazy posts that you make after a long month of work and 2 rum/water/juice/vitamin C combinations.  Oh yeah, it’s that crazy!  I’m implementing my Paleo doctor’s recommendation of vitamin C (liquid form) into an after work drink.  My drink: 3/4 water, 1/4 mango juice, and oh to make it above 100%, we’ll call it a splash of coconut rum and 1/2 tsp of vitamin C.  It’s been a rough few days.

I have to be honest that I try not to let my private life interfere too much with my website, as I’m a very opinionated person, and I don’t want to alienate anybody looking for help with RA.  Call it a rough week, the drink, or the exhaustion speaking, but I thought I would air it all for the world to see…. this one time.  Please forgive me if you share different views.

I suppose it’s not hard to figure out from previous posts that I lean toward that hippie side of life with worm composting and solar panels.  I realize more and more every day how privileged I am in this world that I have the opportunity to get my medications for RA, choose more expensive foods that are healing my body, work part time, and still enjoy a somewhat comfortable middle class life style.  I can’t tell you how lucky I feel to have married a man who supports me in my endeavors and acknowledges, without (much?) judgement, my weaknesses.

My new favorite word (besides “snarky” which is totally fun to say) is “privilege.” I see more and more every day how lucky I am in this life, and how others aren’t always able to meet life’s challenges in the same way. 

I’m a speech-language pathologist (SLP).  I’ve been working with kids who have profound autism for over 18 years.  I work with challenging kids in a Kinder – 6th grade program.  A typical kid coming into kindergarten in our program would not have communication skills in any basic way, not be potty trained, and not interpret the world in a way that would make sense to most people.  Most of our kids come in with some form of aggression as a way to get what they want.  I feel like this job is my calling.  I feel good at it.  Where most SLPs in this position leave after 1-2 years, I’ve been in my current job for over 15 years.  The program I’ve helped to set up structures everything very clearly for our kids.  It’s not perfect, but I’ve had the joy of having kids say their first meaningful words in kindergarten.  I’ve been able to take children who are very aggressive (as this is typically the only way they know how to get their needs met) and get them organized, calm, and communicating.  It’s not every kid.  I don’t have a magic pill, just patience, persistence, and knowledge.  But it’s a lot of kids.  It’s enough kids to keep me going back year after year.  I had the awesome experience this last spring to hear one of my former students, initially nonverbal, who ripped all of the outlet covers off the walls the first day I worked with him, give the commencement speech at this high school graduation.  His dad nominated me for one of those “everyday hero” awards on the radio.  It doesn’t get much better than that.

For about 10 years now, I’ve been working part-time.  Initially, this started as somewhat of a nervous breakdown.  My full time job was stressful, working 2 1/2 days a week in the autism world, and 2 1/2 days a week serving moderate communication needs in a high poverty school.  It worked for 4 years until it didn’t.  In one school year, I sold my house, was “homeless” (aka living with friends), got married (while “homeless”), bought a new house, had friends live with us temporarily (waiting for their house to be built), had my in-laws (very nice folks) temporarily live with us, was in a major car accident with my husband in which he broke several ribs and transverse processes of his spine, and I had to have the upper left quadrant of my face reconstructed, the ensuing medical bill nightmare, the death of one of my students in a house fire that he started, the death of my grandmother, and a miscarriage.  Quite literally, I cracked somewhere around the death of my student.  With an extremely understanding husband, and the thought that it would be temporary, I went part-time at work, working only in the autism program.

Well, then I got pregnant, had my son, and the ensuing RA nightmare that I didn’t really ever fully recover from, although certainly became as “normal as possible” 7 years later after starting Paleo.  I’m still working part-time.

The thought has come to me that I should go back to work full time.  We could use the money.  We live cheap (no cable, no cell phones, old cars, etc…) to allow me to stay half-time.  Unfortunately, the “old cars” caught up to us, and in the past 3 years, both of our vehicles had to be replaced, which included dreaded loans. 

I love what I do.  I feel called to it.  I’ve been able to see many miracles that I don’t think happen all that often in the autism world.  I feel like I’ve had a big part in those miracles.  Again, not for every kid (oh, how I wish), but enough. 

Here’s my dilemma.  I cannot work in autism full time.  I went to physical therapy for 2 years, on my own (thankfully heavily discounted) dime, to be able to continue doing this job.  It’s physically demanding.  I am exhausted at the end of every school day.  I probably change 30 diapers a week on kids who sometimes beat on me while doing so.  I need to lift kids, some kids who are heavier than me.  When kids are struggling, or having medication changes, or not sleeping, or dealing with changes in their lives, I put my body between theirs and peers to protect.  Although it’s not typical, I get hit, bit, scratched, have furniture thrown at me, head butted, punched, etc…  And every day, I do my best to hold no grudges, go back and demand a student’s best efforts, try to not be afraid, and to know and understand that my kids see the world differently.  I try to make my demands simple, clear, organized, and rewarding in a fashion that my kids understand.  Yes, I know you can do this simple task. Yes I know you’re used to getting your own way, sometimes by hurting others.  Yes, I know this is not you, but your interpretation of this world.  Yes, you need to do this task to learn and grow and function in this chaotic world you struggle to understand.  Yes, I will sit and wait until you are ready, even if that means you are mad, even if that means you scream and hit, even if that means you don’t want to, even if it takes two hours, because I believe in you, and I know you can.  I know that if you start doing these simple things, it will lead to harder things.  It will lead to learning, and it will lead to life making more sense to you.  I will wait until you are ready to show the world what you know.  I will wait.

Jump up a level to the world of education, to the politics, to the funding issues, to real life.  Yeah, here’s the part I’m probably going to piss some people off.  It doesn’t take much to realize that education is being bashed.  I am being held to the standards of “No Child Left Behind” and “teacher accountability” and everything else.  My pay has been hijacked by people who know nothing about what I do.  They say because my kids aren’t reading and writing and doing math at grade level that I am ineffective.  Working with this challenging population is suicidal to my career and livelihood.  Yes, I see miracles, and yes, I have some parents (certainly not all) who think I am the best thing that ever happened to their child.  But none of that matters.  According to the news, and the crazies in charge of education, I am lazy.  My knowledge and training mean nothing.  A good politically designed curriculum and an uncertified minimum wage teacher could do just as well.  And they are pushing hard for that.  Very hard.  And through billions of dollars in propaganda, they’re winning that battle, both politically and socially.

I still cannot believe I have done this.  I am not this type of person, or so I thought.  Hmm, but I guess I am.  I’ve become a political activist.  I am the crazy lady that approaches you at your kid’s soccer game about signing a petition to get something on the ballot to increase education funding.  I have protested.  I have taken my son out of school to teach him about appropriate civil disobedience.  He has protested.  He has marched in an Occupy movement with me and his dad, carrying a sign in support of his school.  Did I mention that my state typically falls between 45 – 50th in per pupil funding of the 50 states?  Did I mention the district where I live (and he goes to school) is ranked 172 of 178 districts in the state for per-pupil funding?  Although I work in a district outside of where I live, when the recession hit, I took a pay cut for 3 years starting in 2008.  I still have not “made up” that loss.  Of course, some will say I got a raise when they reinstated my 2007 pay. Hmmm.

So in the midst of all of this, I had a really really awful day yesterday.  Our kids, according to our district, don’t deserve adequate teacher and para-educator coverage when somebody is ill or has a training.  Well, they will hire a substitute for the teacher, but they pay so little, that nobody shows up, as in this case.  Para-educators, forget it.  Make do.  Figure it out, they say.  Yesterday, that meant that we were short 3 of 6 adults in our classroom (wow, the germs have hit early this year, and it never fails the kids get sick one week, and the adults the next).  As a result, we couldn’t maintain our structures and routines.  As a result, the kids had a confusing day. Confusion is never good.  It leads to panic and behaviors kids wouldn’t demonstrate in their typical structured environment.  In addition to that, we had a student who has been having a really hard time both at home and school lately.  Long story short, I got bit, badly, as in I had to leave and go see a doctor.  In 18 years, that’s never happened to me before.

Deep down inside my leg, it hurts terribly, but on the surface, I have about a 6 inch round circle that I can’t feel at all.  Nearly my whole calf is swollen.  Luckily, most of my flesh is still there.

I complain about my job a lot, the cowardice that is politics, the money grubbers out to make money off of for-profit charters and privatizing, the folks who want to pretend that my students…. my kids…. don’t exist, the people who pretend that complex problems have simple answers, the people who take support away from my students, the people who think me ineffective.  And you know what?  For 18 years, it’s been a complaint, it’s been a source of my political activism, a source of my defiance in the face of it all.  But then yesterday happened, and even though I was able to go in today and not hold a grudge, to show my best face, and to love this child through her troubles, I am angry.  This political system is putting my kids in danger.  I am liable for the safety of these kids, staff or no staff.  It is putting my career in danger.  It is putting my physical health in danger.  And I can’t begin to tell you how much I love this work, but for the first time, I think I am seriously questioning if this is worth it.  And I know that’s what “they” want.  They want me to quit, for the public education system to be starved into failure, because we can’t afford to hire staff, because we can’t afford substitutes, because we can’t afford to support kids with special needs, because we can’t even afford enough staff to keep kids safe.

Will this setback become further political defiance for me?  Will I give up?  I don’t know yet. Can I go back full time in this climate?  Certainly not.

And then we get back to privilege.  You know what?  My kids were not born with privilege.  My families struggle immensely under the struggles of autism, the costs associated with therapies, the marital strains, the frequent health problems that co-occur with autism.  They need somebody to care.  They need good teachers, SLPs, and community members to stand up for them. If I don’t continue to do this work, who will?  Because people leave in droves every year, and each year, new and less experienced people come in, burn out immediately, and leave.  And not just in autism, but in any high needs population.  Does anybody care?  Is anybody listening?  Can this message be heard above the propaganda?  Does anybody care that our “great society” is not adequately educating our kids (and not just in the world of autism)?

And I’ve got my health challenges to look out for.  Do I give up my  ability to get my medications? (yeah, even when I got health insurance through my work, the out of pocket costs and work and attorneys needed to get things covered were out of this world… by the way, attorneys are very helpful and not necessarily as expensive as you think, especially compared to a big medical bill).  Do I continue on this increased cost of living without any consequential pay raise?  What happens to me when I can’t afford to take care of my health?

I think I need to be done ranting now.  Should I even post this?  <sigh>

Love to you all, and I hope that your lives are secure, and you can get the medications and therapies you need, and you’re able to manage your lives and health with dignity.  I hope that you are loved and supported in this challenging place we call life.

 

 

 

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