Gratitude with an Attitude. The Bigger Picture of Advocacy.

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Lots of people have jumped on the November Thankful Challenge on social media. I see people try for 30 days to declare the things in their lives for which they are grateful.  As a therapist, I can tell you its an excellent exercise in mindfulness–a way to connect and be present for those things we tend to take for granted.  Soul soothing salve  in the bustle of every day life. It’s also helpful from a cognitive-behavioral standpoint.  If we take a few minutes every day to reflect on the things that are going right amid the trashcan fires of life all around us, over time we can actually retrain our brains to become more centered, less reactionary and supposedly just happier in general.  It becomes a good habit.  So, why don’t most people take appreciative stock every day?  Well…I believe its because most of us have what we need (most and need being our operative terms.). So even if you don’t have much, you DO probably at least have a roof over your head, access to clean water, some kind of education and likely at least one person in your life who cares when your birthday is.  When things are going OK and at least that bottom floor of Maslow’s pyramid is built, we can still say, “well….at least I have my health” or “I’m lucky I have food on the table”.  This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society and when we are not bombarded by rampant poverty in the streets or young people regularly dying from things like dysentery or malaria. Yet as special needs parents or as a disabled people, we are often expected to display this type of gratitude and grace in circumstances that at times feel this imbalanced.

I have somehow won the life lottery…and I didn’t do anything to deserve that any more than some starving, orphaned toddler in a war torn country did to deserve his lot.  There are many people who might look at my family and think otherwise since we were dealt the hand of having a child with a disability.  We have a life that can be exhausting and lonely and sometimes just very scary but what I find is that when life is that way, it is rarely because of anything my child has done or his disability itself…its more about the circumstances around him that prohibit understanding, access, equality or equity.

And thus the rub of the special needs parent and the expression of gratitude toward professionals who serve their child.

If a surveyor asked my child’s providers,”Do you think A2’s mom is grateful for the services you provide her child?”, my guess is that at least 80% of them would answer “no”.  They would be completely wrong, but still.   If that same surveyor could time travel and go back year by year to 2007 when A2 first started getting help and ask the same question, I  suppose that the percentage who would answer “no” would shrink in proportion to year asked.  Regardless of how many holiday gifts, number of hours I volunteer, amount of money I donate, number of thank-yous doled out, at this point I am still going to be seen as a wistful pariah.

As A2 ages and the disparity in needs between he and his peers grows, so does the need for advocacy.  There is a pervasive belief system that exists that keeps those who are disadvantaged in some way from asking for more and it is through the guise of gratitude and the false belief that the basics are a form of entitlement.  You are lucky to get what you get….even if it is not meeting your needs.

  • 20 sessions of speech therapy for your non-verbal child?  Well…at least your insurance gives you that much…some people can’t get speech therapy approved at all!
  • I’m not really seeing progress in my child, but the aides are nice to him and he seems happy.
  • Keep a mastered list of  goals to probe yearly?  You’re lucky we can even work on her goals with as many as she has.
  • He doesn’t need a bus aide.  He can make noise so its not like it would turn out  like  that boy who died on his bus because they forgot about him all day….
  • Sorting nuts and bolts is a career for lots of people. She may have an above average IQ but she’s lucky anyone is willing to take a chance on her
  • Kids just love him here at school, but no….we can’t tell you who any of them are so he can invite them over and extend those friendships to the community.  At least kids play with him here, that says a lot about the kind of person he is.

When exposed repeatedly to systemic issues that shame you into to accepting less, you get a little crisp when it comes to the process of fawning over people doing the jobs they chose. Can you imagine for one minute being OK with your child failing a subject at school and then thinking, “well…at least no one is hurting him there”?  No…those things are not interchangeable.  Ever.  Or what if your child’s class was going on a field trip bowling, but because they didn’t have bowling shoes in her size they just didn’t even tell you about the trip? You are probably going  to get more than a little angry…and maybe even angrier when they suggest that all the kids who wear a size 6 shoe will get to go to for a tour of a widget factory instead at the end of the year, so what’s the big deal?  As parents, we want to always feel and show gratitude to those who we entrust our children…but when trust is bent it dulls the surface.

At the end of last school year, one of the school administrators let me know just how stinkin’ cute A2 is and how he brightens everyone’s day and how much kids just love him.  “He has made so much progress..he comes right up to me now and always asks to see the PA system!” she exclaimed.  I nodded and smiled and said nothing about how platitudes like that can ruffle the feathers of pre-adolescent special needs parents because, you know….gratitude and grace. We have to show ours a bit differently. It’s not that we don’t like the compliment, however very soon, that go-to strength of his of being little and cute, the thing that draws people to him and keeps people friendly  will be gone. Drinking out of a sippy cup with a full beard is not adorable….it will be confusing and odd to people who don’t know him.  And it scares the hell out of me. So instead I say nothing for fear of not seeming grateful for at least that.

“Yes, progress.” I say. “Though I worry. He still cannot read, we still have not cracked that code and he only has one more year here”.  She side eyed me with a friendly smirk , lifted her finger as if to gently stop me and said “Mrs. ASquared, you GOTTA focus on the positives.  You just gotta.  He’s a great kid”.

Do I though?   I keep getting taught that focusing on his deficits is how we move forward. And by the way…Yes, I do….and I do it all the time….but not  for the purpose of making sure other people can see the gratitude.  I unfortunately don’t have enough energy anymore to  make others feel good for doing their job .  Its not to be cruel, its so I don’t lose sight on how to do my job.

Focusing on the positives is why I have to advocate and ask for more.  More out of the box thinking, more time, more energy, more inclusion.  I see what he is capable of achieving all while being systemically reminded in quarterly meetings of things he still cannot do, how services won’t be expanded to accommodate that fact and how planning for a future where if we are lucky, he will get to be a marginal member of society. My child lives in a society that sees the deficits, that sees the differences and believes that the slightest hint of meeting his needs because of his differences is an entitlement.  A society that believes that being adorable is a strength. A society that makes heroes and saints and examples out of others showing my child dignity, when they come to work or are being a friend.  A society that doesn’t hashtag abuse, neglect, bullying and even murders against children like mine.

So team members…if you are confused about my level of gratitude for your involvement with my child, don’t be.  I am never short on gratitude, and when my child is happy and progressing, what our collective efforts are doing is working.  I too have a job where the pay is low,  the paperwork is tedious and 100% of my work is about helping other people. I too am rarely told thank you but that is not why I do what I do.  I am trying to make the waves to change systems and influence the way the world sees people who are at a disadvantage. By accepting less simply because we are told we should be grateful for what we get is the dysfunctional thinking that will keep things inequitable.. always.  I am doing the future of disability advocacy and everyone who works with kids like mine a disservice by this act as well. When I am sitting on this side of the table,  its my job to check and double check your work, ask questions and tell you when something isn’t working.  That is not the opposite of gratitude, that is showing you that what you are doing matters. Its the ultimate compliment.  My kid is your boss and I am trying to teach him to always get what he needs based on HIS different needs in this world.

I’m just trying to do my job as his mother, one that is universally never the recipient of gratitude is often met as if I am a villain and yet is still the most rewarding job in the world.

Sliding Doors. Looking Forward. Looking Back.

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A few weeks ago I was stuck in traffic.  Albeit Midwest traffic, but a standstill is a standstill.   A1 was incensed in the same way any curmudgeonly old man dealing with road lock might with a loud “C’Mon!!!” and a quivering fist in the air.  Except for the fact that he is a 6th grader who was going to be late for religious school.  And he has never  personally navigated traffic of any kind.  I calmly explained to him that sometimes life is quirky.  Had we left 15 minutes earlier we might be part of the accident slowing everything down.  Or maybe by showing up 15 minutes late he might miss the most boring part of class.  For all we know inconvenience is a blessing in disguise.

For all we know.

Netflix is showing the movie Sliding Doors this month (and serendipitously also showing Serendipity, a way more palatable existential rom-com).  It stars Gwenneth Paltrow as a woman who has parallel lives occurring based on minor differences in circumstance that alter the outcome of her immediate future.  Ultimately  three things are revealed: #1.  The event that changed everything was out of her control, seemingly extraneous and unnoticed by her #2. Everything that happens happens in parallels whether she is part of it or not  #3.  The outcome somehow is going to be the same regardless of the path.   I showed this movie to A1 to drive a concrete point home in the spirit of control and lack there of.  I have this funny thing with the idea of omnipotence and omniscience at the same time….a notion that seems cruel to those of us whose minds cannot conform in that manner no matter how much salvation sounds like a cozy deity-down comforter everyone else can snuggle in.  It means people like me and A1 are damned from the start because we just CANT …and it was planned it that way.  Like being forced as a child to hug and kiss a relative even when that relative knows it makes you uncomfortable to do so.  All in the name of making that relative feel warm and special.  Except what kind of weirdo feels all the good feels by making a child squish their body against theirs against their will?   That is why I show Netflix movies to my kid instead of reading parables.  I’d rather he believe that people just think he has bad taste in movies than that his life and choices are meaningless and filled with anxiety because his synapses don’t fire in a way that will ultimately please an all knowing being who made him that way.  We cannot help thinking about how our moments might be affecting an unknown future.

A2 operates differently.  These things do not need to be explained to him because he is only in the present.  I am happy because Daddy is here NOW.  I am not happy because I want Daddy here NOW.   NOW I am happy and screw Daddy because we are on our way to Chuck E. Cheeses.  If all is no worse than status quo then  optimism and hope are not necessary if you are only worried about right now.  It really isn’t until someone introduces you to unrealized expectations or well conditioned responses that we develop a sense of disappointment, dashed hopes and anxiety of an unknown future.

In recent years A2 has also taken to obsessively asking “what is the time?” and watching any clock either as if it is a piece of art to be analyzed and admired or else as if at any time it might fly off the wall and attack him like the starlings from The Birds.  His authenticity and ability for stopping and acknowledging the moment in the the moment realizing there will be a new moment soon is a gift.  As we stand on these tracks together I think about how Autism has robbed A2 of a regular childhood but probably not because he views it that way but because I do. There is a lot of track already behind him but there is much more ahead and I strain to see the horizon in case a train comes barreling down the tracks…..because at some point there will be a train. And there is nothing I can do to stop that.  However, A2 only looks at the rails beneath his feet being careful not to trip and he only looks back to look at me.  If he were to hear the distant whistle I am sure he would simply step off the track in that moment so he could watch the train go by.  Because my focus is on the horizons while stumbling down the rails I run the risk of getting my foot stuck between the slats and then panicking thinking about the possibility of the oncoming engine .  I am hoping that in 2016  I can continue learning from A2 as I struggle with the concept of mindfulness especially when the moment seems bleak.  I hope for the ability to recognize each moment as unique and not as good or bad and that I can cherish the people and things that are important to me regardless of how time seems to be treating us in the moment. I just need to remember to point to my wrist and ask “what is the time?” and know that it will be different soon.