Clutching at the Heels of the Disabled: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

white-1184178_1280I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man.  Since she passed him in the exact same spot  for three years her curiosity finally got the best of her . You can see it here.  He was thin, unshaven, filthy.  We’ve all passed “him” on the side of the road, haven’t we?  Remember the Man-With-The-Golden-Voice several years ago who hung out by the highway and  became a media sensation?  I passed him…sometimes twice a day on the way to my child’s school.  There he was–all wild haired and looking strung out. And then there he was on Dr. Phil with a Cliff Huxtable sweater and a haircut.  A former radio announcer who succumbed to addiction.  We were all cheering him on–he had a Golden Voice and would contribute to society with those gilded vocal chords.  And my, wasn’t he handsome with that haircut?  He could practically be someone we knew!

I digress. This woman from Texas stopped to ask this man why he was always in the same spot all day, every day.  He told her he was waiting for his mother because that is where she left him.

He was waiting for his mother. Right where she told him to wait for her. 

To be sure, his mother was not coming back and this man  struggled with mental illness.  But maybe she really did leave him right there the last time he saw her.  This could very easily be my beautiful boy.

Let me give you some background on this….

What you might not know is that he didn’t suffer from mental illness…that came later in life.  He also had Autism with a speech disorder and a learning disability.  He was raised in an affluent suburb with the best schools in the state but they failed to teach him to read.  This man’s parents were older when he was born, were highly educated, had good jobs and didn’t retire until they were forced to.  His grandparents were all elderly and required care themselves. His father had excellent medical benefits at work that covered most of his care and his mother was extremely resourceful and was able to access everything available from funding to therapies to alternative treatments.  This man’s parents saved as much as they could and because of his unique needs, his mother could not work full-time.  Care for a disabled child is a commodity.  In childhood, the man’s parents tried to give him the most enriching life possible with as much exposure socially as they could.  He found so much joy in being out in public going to sporting events, concerts, religious congregation events and festivals. His parents looked at spending money on these activities as investments since staying at home did not provide him with any social opportunities at all.  After he was about four years old, there were no more parties or play dates or neighborhood shenannegans. His parents were his best friends and gave him a life outside of the house.

This man was once an exceptionally adorable little boy and it was so easy for him to get attention and love almost anywhere he went.  That is, all the way up until adolescence.  It became confusing to him when people didn’t respond in the same way when he would wave at them and say “hey!” or approach their table in a restaurant just to say hello.  His parents put off making a trust because the idea of appointing a guardian was so daunting.  How do you ask someone to make sure your child is OK for the rest of THEIR lives?  How do you ask them to make sure that child has a guardian beyond THEIR lives as well?  Given his parents became increasingly socially isolated as he grew older, it was hard for them to even consider options.  So they just didn’t and hoped for the best.

The boy grew into a man and it was important to his parents that he felt like one. They insisted he held a job and helped him find work wherever they could.  As they grew older, their health issues became too much for them to be able to continue to change diapers or physically help move the man to safety when he got upset and ran in the direction of danger.  The man’s health care waiver ran out when he turned 22.  Reluctantly, his parents dipped into their accounts for his care and in less than 5 years, they ran through their life savings. The same amount of money that would have been considered sufficient in any other situation in old age.  The parents did everything right.  The man worked hard his whole life to be the most contributing member of society his parents could push him to be. And yet…..one day on the way to a doctor appointment, the mother asked the man to wait outside.  She was afraid that if the doctor saw she was trying to care for an adult with a disability he would be taken away…taken away to live in a substandard long term care facility…one that was short staffed where he would be living with strangers. The Medicaid cap would release him to the streets when it ran out. Well…frankly, it was better to let him wait outside, she must have thought.  That is until at that doctor appointment he determined she needed surgery immediately because all the nausea she was having recently turned out to be repeated heart attacks due to a blocked artery. Only she didn’t make it in time to let anyone know her beautiful boy was waiting on the curb for her.

And there he sat for 3 years.  Wandering for food. Wandering for help, but due to his speech disorder and illiteracy, there was no one who understood him enough to know who he was or what he was looking for.  He looked crazy. He looked drunk.  He sat and wandered until that nice lady finally stopped to ask him who he was.

This could be my son.  My beautiful boy.  The kiddo who is 11 years old right now. Of course, it is not.  I actually know nothing about this man from Texas or his background.  But I certainly can imagine this very real scenario.  It is a scenario that keeps me up at night with the exception of the kindly stranger and the happy ending on channel 10.  For those of you who believe people who live off the system have made their lot in life or that they are owed nothing…is this who you picture when you see the guy sitting on the side of the road?   Because that guy may have once been my beautiful boy….your white, upper middle class neighbor’s child who you thought was a ‘cool little dude’.  Where do you think those kids go when they have no one? (and if one more affluent person who knows my child says “well….THAT’S different” be prepared to introduce me to someone else you know milking the system.  Go ahead…I’ll wait right here.).  Because you personally know me and because you personally know him and we kind of look like you  does not make him more deserving than the dirty adult sitting on the curb you think you have never seen before.  That guy that is owed nothing. You just don’t recognize him because you keep your eyes on the road.

I don’t think…I KNOW that one day I will die. Unless I sell my soul to the devil, I am not sure how I will manage to work a  steady job through my own elderly death that will happen AFTER his . I keep reading how his care should all be on me.  And it most certainly is.  And my husband and I have done everything we are supposed to do.

Today.  Call your congress people TODAY.

Don’t know who they are?  Click here to get the name and contact of your National/State/Local representatives.  Don’t know what to say?  Pick out the parts of this article that spoke to you the most and read it to them.  Remind them that NO ONE is a throw away person….not any of their constituents.  Not even the ones that cannot vote.

Stop what is happening with the repeal of ACA.  $800 BILLION cuts in Medicaid are going to be made for tax cuts to people who don’t really need those tax cuts. Medicaid will come in block grants to states with caps….and those caps come quick.  Where will my baby go when he meets his cap?  1 out of every 6 children have a disability and many of them depend on their families to ensure the bulk of their care and with Medicaid to help where they cannot. I have split my time between working and paying taxes to the country I am asking to help and also providing his care.  What happens when my child is not in school and needs full time care?   How do you keep a job and ensure your commitment as a tax payer while also fulfilling your duty as a parent of a disabled child?  If I don’t have a job, he is a freeloader.  If I do have a job, I am a freeloader AND negligent. The circular logic for the reduction of assistance and subsidies is just that ridiculous.

I am glad to hear that man from Texas is doing well.  I am glad there are middle-class individual citizens out there who might stop their cars to find out how they can help.  This, however should not be my son’s disability policy. His life is worth more than a sound byte on the local news.

When Pain Drives Passion. What is Your Story?

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As Kelly knelt  on the floor folding her lighting equipment into her duffel, she looked up at me and said in earnest, “I feel like we have to do this fast. These stories need to get out now.” I felt the sick sink in my stomach because I knew she was right, but we just got started.

I half jokingly refer to Kelly as “my photographer” only because “this girl who agreed to come along to take the photos of interviews I am doing  for this idea I had and had no idea what she was getting into” sounds lame..and lengthy.  Plus her quiet role moving about the room with the important strangers who agreed to bare their souls to me for two hours gave them legitimacy.  What do you call the person who helps provide authenticity to an experience?  I don’t get to own that part.

Kelly bore witness to a world she knew nothing about three months before she spoke those words to me in an Airbnb in Dallas, Texas. I met Kelly randomly through a friend the previous summer at a concert.  She was a confident, ticketless passenger on the way to a sold out show and found a scalper feet from the venue. I appreciated the cajones and thought she might be someone I would want to know.  I did not realize that five months later, on January 27, 2016 we would be sitting for our first interview of a few dozen across the country.

We officially started a whole year ago as of today. Happy anniversary Kel.

Words like inclusion, rights, entitlements, supports are finally part of every day vernacular but even by definition imply separatist “us from them”mentality and leave out the miles of mountain range between the first mile and the last. But to me, those words felt like more than just a start.

When I got up off the pavement a year ago, I  believed society and disability subculture were starting to speak some of the same language. I also believed that some of the narratives were getting further and further apart causing a rift within the movement. The time felt ripe to help normalize the experience of being disabled in a way that was not out of pity but rather in a way that lit up the path to be traveled.  It was time to assume that folks were coming from a place of not knowing and not from a place of not caring.  My personal mental exhaustion was not about my child or his disability, but the wholly unnecessary loneliness, barriers and misunderstanding by the world around us.  How off the hook is it I believed changing the world around us would be simpler and more empowering than kicking those pebbles out of the path one at a time?

At the time, not so hookless. I gave a TEDx Talk about the first step in climbing the mountain of disability advocacy as a society.  The itty-bitty baby steps of encouraging the general public to lay down misconceptions and engage in discourse with someone who is disabled.  I encouraged people to unabashedly just ask about things they don’t know. I called upon the disabled and their caregivers to collectively lift the stigma of living with disability by being honest and non-defensive in talking about what it’s like and what they need.  I traveled the country and spent hours and hours recording and photographing and connecting to regular people in extraordinary circumstances to put into pages and immortalize moments on glossy paper for them. I shined up a little piece of the internet for myself under a pen name to create and share in the most balanced way I could. People were believing in what I was saying.  People were hopeful. I changed minds. Momentum. Or so I thought.

Through this process, I held the value of neutrality and being non-partisan.  Everybody’s story resides in the same place within them regardless of the story’s beginning, middle or end.  Allowing people to tell their story while providing them with unconditional positive regard served as a catharsis for both myself and my interviewees.  I found it was not difficult to empathize with people whose world I didn’t fully understand or framework I did not fully agree.  In social media,  I shared stories of injustice or cruelty without solution or politics.  Awareness is the first step of acceptance…it is not the end result.

Alas, I am not an advocate.  I am a storyteller.

One year later, I am sitting at the same desk but in a very different place.  I feel scared. Was I was horribly wrong about this genesis of readiness for change?  It has been a challenge to remain non-partisan especially in a time when it seems that perhaps these stories sink to the bottom of the advocacy pile.

The other night as I sat hunched over my computer trying to put a cap on my 1 year experience, I tearfully told my husband we are beyond storytelling at this point. I am fearful of having too much opinion out of concern of not holding my neutral credo for the greater good. It goes against my nature as a social  worker. There is a war going on between human rights, human entitlement and government in a narrative that is getting louder and undeniably self-serving to each individual yelling. This goal of reasonable human rights only has a matter of time before we are splintered into pieces again and we are fighting against each other get what we need. It is hard to see where or how this will end right now. Issues that are truly a big deal today may seem like the good-ole-days in the near future. I worried about the juxtaposition of storytelling in an ocean of endless islands of stories. I was feeling disheartened and selfish that evening that this project was down the tubes.

Instead of walking away like he might during a moment like this, my husband turned and said “What if this is about change for the better after all?” He went on to contemplate the lack of passion and purpose as a whole in this country in our lifetime. The things that divide us and crawl under our skin has created less listening and more waiting for our turn to talk. Or worse yet, NOT waiting for our turn to talk and yelling over the opposition instead. He optimistically reframed this unprecedented business-as-politics as the catalyst of the birth of this generation’s common cause. The most powerful man in the world and those who surround him believe that there are “alternative facts” leading the rest of us into a state of despair and confusion over the possibility of never understanding what is true or real. This is the stuff of propoganda and crazy-making.

“But…hasn’t that been your truth for years?” my husband asked.

He was right. Those of us who live with oppression in some way or another in this country have been working off the premise of alternative facts for a long time. At least those of us who are caregivers to those with disabilities who may not be able to speak for themselves, we are told over and over to accept half-truths or are simply told “no” for nebulous reasons when asking for inclusion, equality or safety.  Or else we are dismissed,discounted or ignored. This is not new. Some of us sink into deep holes of acceptance of this and others of us jump up and down and yell as loud as we can. And sometimes we do both in intervals. It is through this collective place we can pull together instead of being one small group spitting into the wind while down wind from us is some other oppressed group covering both of us in spittle.

“I wonder if there will grow a common one big enough to make the noise it needs to? People as a whole are a lot more awake than they were…and maybe that is not so bad” he mused.

Regardless of what you believe or how oppressed or even how entitled you are, it is time.  Listen calmly. Don’t wait for your turn to talk. Take the information you get from other people’s stories and learn from them even if you disagree. Even if you don’t understand. These words may help heal or give you the tools to fight even harder or maybe even change your mind. We can yell as much as we want in the faces of those who don’t want to hear….collectively it may eventually work…but individually, that will not change their minds in a world where people are desperately trying to cling to what they think they believe.

It is time. We all have a story.  Kelly can tell you what it is like to bear witness to that listening from behind a camera first hand.

Or as she might tell you, it will make you woke AF.

 

 

 

When is School Choice Not Really a Choice?

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While it is understandable why a parent like myself with a child with significant disabilities within a public education and governmental system would feel overwhelmed by all of the details, the truth is I felt that way about political systems before I even had children. I am very Gestalt and particularly nervous when it comes to leaving out a detail (Ever. In any situation.Try me.).  The Whole Is A Sum Of Its Parts is most assuredly how I have always seen the world.  If I miss a piece, I promise I won’t understand the big picture.  Often the bigger problem is knowing whether I have missed a piece, so I comb and comb for those pieces until I end in a pile of crumbs.  And then?  Well…..once I sweep up…watch out.

Our collective current public educational system is fraught with problems that overwhelm me to even consider how they can be overcome in a fair and meaningful way.  And to be clear, this does not mean our educators are at the top of the problem list.  I would challenge anyone who believes this is the case to go spend one year as an educator in even a high performing suburban school district.  The financial, legal, logistical and social  constraints that exist would send a person without the passion to make a difference in the the lives of kids running to do almost anything else.  The issues that exist in public education are systemic in nature. They are systemic but not static so I have believed it possible to slowly turn the ship around.  Fully funding IDEA would be a great start…but that is the thing about getting overwhelmed by details. Out of survival, you hone in on what will have the most impact on your own world to create your own big picture.

It would be easy to turn this into a 5000 word article and focus on all the talking points about why public education is failing everyone and also on all the fundamentally terrific things public education is doing right.  But focusing on those things is the parlor trick we all seem to be falling for these days. The guy with the horns and the trident is awfully entertaining with his sleight of hand while we’re busy, a well heeled woman sitting before the Senate is making plans to create a systemic and fundamentally flawed plan to oppress and contain the most vulnerable children.

There is no time to yell about unions or standardized testing or who we are not listening to when we don’t have an adequate solution and you don’t have the details to understand why they are there in the first place. It’s like slapping yourself in the face.

Yesterday at the Senate hearing for confirmation of Secretary of Education, opponents of Betsy DeVos were alarmed at just how unqualified she appears to be for this position as evident by her lack of knowledge of crucial educational and fiscal details and seeming inability to directly answer questions.  Mrs. DeVos struggled in the brief periods of questioning to give details about how she will ensure/protect/educate. I am not so certain that having someone who understands every detail of public education is actually necessary or even preferable.

However, I do not believe that Betsy DeVos was one bit “confused” about the Individuals with Disabilities Education Act being federal law and not something that the states decide. I do not believe that she doesn’t understand the difference between proficiency and progress.  I do not believe that she was having trouble answering questions but rather she answered those questions loud and clear.

  • Should all schools, public, private and charter have EQUAL accountability standards when accepting taxpayer funding?
  • Do you think that all schools receiving federal dollars should have to adhere to the Individuals with Disabilities Education Act?
  • Should schools receiving government funding have to have the same reporting systems for bullying and harassment?
  • Will you enforce the law for disabled children should the charters go into place and they might be accepted at the charter?
  • Will you defund or privatize public school?

Instead, Mrs. DeVos let those members of the Senate know how happy she would be to make these discussion points in the future.

No…. I don’t think  Betsy DeVos was confused.  I think she doesn’t care, because in her world the devil is in THOSE details and it appears sometimes the devil comes in the form of anyone different or disadvantaged.

Her plan it seems is to create selective schools that she won’t state whether they will adhere to the federal civil rights protection for disabled students or potentially even for just their protection at all.  Over time, disabled students and socially/economically disadvantaged students, students with  behavioral issues are going to once again be segregated due to selective admissions processes, “waiting lists” differences in educational accountability and financial discrepancies between those who can afford the gap in tuition not covered by a voucher.  There will be no such thing as inclusion in schools it will vanish with the details.

For me, this isn’t a matter of lack of understanding or even sour grapes.  I live in a state where there is a “scholarship” program available for students identified with a disability which we used for A2 through pre-k and kindergarten. Given his Autism diagnosis, he qualified for (at the time) a $20,000 voucher through the state board of education to use with a scholarship provider.  Our district was still responsible for writing his IEP so we would meet annually to update.  We found an excellent match for him at a local private, not-for-profit Autism school and in just three months I was pleased to show our district the tight data tracking his improvements.

Short of realizing he wasn’t getting everything he needed in public school, overall, we had a positive experience using this system because the stars were aligned.  A kid happened to move away opening a spot in the classroom, otherwise A2 would have been on a waiting list.  Our district did not transport him so I was unable to work much so I could take him the 20 mile round trip jaunts twice a day. Things were very tight for awhile because we were still responsible for $8000 a year out of pocket toward the tuition.

The biggest trade off?  By accepting the scholarship, we relinquished our rights to FAPE (Free and Appropriate Public Education).  In other words our “school choices” were:

  1.  Stay put and spend thousands on attorneys to try to prove he was not getting an appropriate education (as evidenced by the amount of progress he made with a specialized ABA program)–but in the meantime, if we filed due process based on the law, he would have had to “stay put” until a resolution.  Which could be years.
  2. Find another school that could accept him, provide our own transportation, find $24,000 for three years of out of pocket expenses AND hope he gets what he needs because the private school technically does not have to follow the IEP.  Nor technically are there any reprecussions for not meeting his needs.

Choice?  Like the Sophie’s Choice of the outcome of my child’s future.  They both sucked.  We only had a brief period of time to harness the little spongy brain of his.  We were very, very lucky it worked out the way it did.  But we were also very, very lucky because we are upper middle class white, intact suburban family with one paycheck that covered everything and a kiddo who did not present with behaviors too difficult to handle.  We were very, very lucky because the school was pretty great at what they did with a caring team to boot.  I am not against the idea of a voucher system and school choice, but in order for it truly to be choice, the playing field must be appropriately leveled. Otherwise, it is only really a choice for some.

Betsy DeVos wants to turn this ship around, but there is a huge iceberg in the way and only enough lifeboats for the privileged and the able-bodied leaving everyone else, including my beautiful boy to go down with the ship.  Our educational system needs fixing, no doubt…but first do no harm.

Feel this is wrong too?  Call your senator TODAY and ask for opposition of this confirmation.

 

Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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Why I May Have to Abandon the Best Coping Skill I Have Ever Had

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My heart is sitting in a basket on my desk next to my computer.  I stare at it wondering if I should leave it where it is or if I should shove it back in my throat where apparently it now belongs.  I  am faced with a dilemma I have fleetingly looked in the eye before but this time I pause much longer as if memorizing the outline of the face of a loved one I may not see again.

I love Facebook. I am like a Pavlovian dog when I hear that DING! and will switch over from work to see whats going on my feed.  Facebook is the most existentially layered version of the real world I can imagine. Everyone from my closest friends to those folks who have crossed paths with me for a brief yet meaningful time are there.  It’s the place where my elementary school besties and bullies post about their versions of how they turned out. People from a former life who hold keys to doors which ushered me to my current self are there too. There are writers and authors and even a real-life famous person here and there (sorry…I won’t out anyone) in the cache of my 560 nearest and dearest.  And I have access to all of them at the same time all of the time.

I take real 1-2 minute life diversions on Facebook multiple times a day.  It’s a weird and somewhat pathetic paradise.  Being a working mother is complicated enough, but I have a few extras thrown on top including a husband that travels and kids with varying special needs which means extra meetings for school, schlepping to therapies, staying current on research, hiring, supervising and managing a home team…and that’s all before actually dealing with the territory of settling in at the end of the day with  kids who just need extra.  Just when I might be taking myself a little too seriously or am feeling a little too isolated…boom….a cat video or Joe Biden meme reels me back.  Connecting in cyberspace is so much more my style and because of that connection I know I am not alone in this.  When I deal with work situations that matter to me, I am a rock star.  I have a purpose and can completely focus externally on the needs at hand.  But socially…yikes. Eye contact, staying focused, not accidentally making a connection out loud as to how the topic focuses back on something I can relate to better….none of those things are my forte.  When posting on Facebook–I can be funny and smart in sound bytes. I can get hoards of people invested in an ongoing saga about my fear of spiders.  I can walk away from a conversation mid-sentence without consequence.  I don’t have to think about where to look or how I am coming across because unlike in real life, by the time my human brain catches up to my monkey brain I have not yet hit “enter” and can edit what I REALLY wanted to say.  Sometimes those two things don’t catch up and that is what the “delete” button is all about.

Facebook levels the social playing field for quirky people like myself.  It gives me a social outlet when I don’t actually have time for a real one.  It keeps me invested in people, events and causes that are important to the real world all around. It provides an escape into brief, clever and timely humor.  It helps me find like-minded people.  It expands the repertoire of  discussions and ideas of which I might not otherwise be exposed.  And I can have all that in tiny spurts all day as needed. It really is miraculous if you think about it.  Communities of individuals who never stood a societal chance before are finding their communities right here on Facebook.

We know to take the good and the bad here. On good days, Facebook is my outlet. Internet trolls and maddeningly misinformed opinion presented as fact are the yin to the yang of my Facebook fascination.  I can roll past things or people who ultimately shouldn’t matter to me.  Something that I fail to do all that well in real life.  But this is changing too quickly for me to cope with in a way I find  acceptable by an election that divided the country before I had any idea we were THAT divided.  I am overwhelmed by Facebook friends and their words of hate or indifference being presented on a platter and served up as just another white meat with no other options for dinner.  I am breathless because I don’t feel like I can scroll past any article that has anything to do with leadership appointment, policy or ideology that may affect my family or anyone else I love.  Suddenly, realities of Facebook friends as minorities, the poor or disenfranchised are inundating my news feed faster than I can read, process and consider and as a seasoned social worker I feel like I am back to my overwhelming roots of weeding which causes need to get the majority of my energies and time.  I have a list of issues and phone calls to congressmen that will trump my everyday life tomorrow.   I am sad and fearful and agitated and distracted and rightfully so. While I have felt this way before on social media, I shut my computer down for the evening, be completely present and come back to a virtual life renewed. I can go back to meaningless status posts that make at least me chuckle at myself. However, in this political climate, I would be this way without Facebook and am having trouble finding meaning in those meaningless status updates. And with it?  Well, I feel much like I often do about real life.  Like I need to take a break from it.

Now I lay me down to sleep….

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4:17am

My beautiful boy wandered into my room tonight.  His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose.  He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king.   I can’t say I hate it when that happens.  He is warm and cuddly and doesn’t thrash and kick like he used to when he was little.  To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why.   As he gets older, he seems no worse for the wear for it either.  The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed.   He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.

The thing is, my husband and I never wake up fully refreshed.  There are Things That Keep Me Up at Night. Who will hug him when we are gone?  Who else will find his sweet smile so endearing even at 3:00am?  We try to be optimistic about his future.  A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is.  We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future.   Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him.  I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can.   We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services  will help house him, feed him, care for him.  We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears.  So we plan as best we can knowing surely, there will be some kind of services for him.

But tonight there is no sleep because now I am not so sure.  I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb.  My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults.  I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”?   What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult?  There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.

The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle.  Perhaps I truly believed all that because I see the innocence in his eyes.  He is a pure soul who has helped me see good first and maybe I can spread that message for him.

So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you.  While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby.  But don’t worry….A2 won’t judge you.  He is forgiving and will love you anyway.

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.

5 Pros and Cons of IDEA: What Every Parent (and educator!) Should Know

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This tower is 4 years total of educational paper work for 2 kids and represents approximately over 300 hours of meetings, evaluations, reading and combing over data….JUST AS THE PARENT

I is for IEP, IDEA and Inclusion.

These three “I” words have forever changed me as a person.  If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing.  All of these things serve as a blessing and a curse to our kids…and also to the educators and administration serving them.  Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system.  It was meant to also focus more on the individual rather than on the disability itself.  IDEA has been re-written several times since 1990.  There are several things it does both in a good way and also in not such a good way:

  1.   It provides a free and appropriate public education (FAPE) to all kids regardless of disability at public expense.  The key word here being APPROPRIATE. The downside: There is a pretty decent chance that what you and your child’s test scores say and what you know is appropriate will be very different than what the district thinks is appropriate.  And most likely because of that other key word….FREE.
  2. Evaluations:  This law makes sure that children with disabilities are evaluated in a way that makes sense.  We don’t want to use one specific test to decide if a child needs special education services.  That way  discrimination is prevented and ideally, these evaluations serve as a tool to know exactly what they will need educationally. The downside:  Evaluations are only as good as the people trained to administer them….and only as good as the educator who can recognize an issue in the first place.
  3. Individualized Education Program (IEP): These are legal documents that establish goals, accommodations and modifications to the general curriculum and access to qualified professionals to ensure that a child with a disability is learning at the right pace and to his ability within their environment.  These plans level the educational playing field for those with a disability.  The heart of special education.  There are 13 categories under which a child may qualify: specific learning disability, speech and language impairment, blindness, deafness, hearing impairment, visual impairment, orthopedic impairment, traumatic brain injury, autism, multiple disability, other health impairments, emotional disturbance, intellectual disability,  The downside: Because they are legal documents and may be audited and are monitored on a quarterly basis, educators may have a very high self-preservation incentive to make certain your child is meeting his goals….at least on paper.  The more savvy the parent, the more tricky this can become.
  4. Least Restrictive Environment (LRE):  This ensures that your child is placed in an environment that meets his needs as independently as possible in an educational setting that is appropriate for him.  The goal is to work toward the LRE.   The downside:  For those of us with kiddos with Autism, this is not always cut and dry.  Especially those who are cognitively intact but perhaps have a language impairment or another issue which may stand in the way of independence.  An emerging issue in the field is for those kids who are considered “twice exceptional” such those who are intellectually gifted but with severe behavioral issues.  And what does “least restrictive” mean anyway?  My kid who needs 1:1 to learn can totally sit in a regular classroom to do that.  However, I believe my district interprets LRE to mean that he be in a contained classroom without a 1:1 because then he might have more physical independence in that room.  Who is right?
  5. Protections for your child…..protections for you as a parent:  Because of IDEA, there are procedural safeguards in place to make certain that your child is receiving the services the school says they will provide and a protocol to follow if you believe they are not.  Additionally, these protections allow for parent participation and child participation as an equal member of the child’s school team. The downside: Let’s face it…if you are not an educator…or even know where to go to get what you need, you will never be an equal member of your child’s team.   Procedural safeguards and parent participation are ultimately only as good as the questions you know to ask, as your attorney and your bank account.  The catch-22 if you do live in a very good school district?  There is a good chance that anything that goes to due process is going to take a LOOOONNNNNGGG time.  And think about that for a second.  If there is a FAPE violation and it works its way all the way up to a due process hearing doesn’t that seem counterintuitive for your school district to allow little old you to go to court with them?  Wouldn’t it make more sense to fix the problem as it would be much cheaper and less time consuming to do so?  It’s not.  At least not to them.  Because no matter how much the school doesn’t want to throw money at something they can still probably afford to pay a better attorney for much longer than you can.  And besides…the year and a half it could take…perhaps that child won’t need what it was you were asking for by then…or make your life complicated enough that you will break and succumb.   That seems like a pretty good gamble for a district.  And then it doesn’t set a standard for other families to ask for the same.

The last 25 years have been interesting ones for the education system as a whole.  When the parents who walked before us clawed and fought and struggled for these laws it was at a time before the internet, before all the revisions, before standardized testing existed in the way it did, before No Child Left Behind and before Autism was 1:68.  IDEA is necessary no matter how you slice it, however it exists in a very different system than it did in 1990.  At this point I know a lot of the law like the back of my hand and the parts I don’t know I am now educated on how to find those rules.  I have a list of socio-emotional goals for almost every developmental issue at my finger tips and I have an entire community of people going through the same struggles I am at the click of a button day and night.  All of this has been achieved through this tiny-huge world we have online.  I know exactly the gap closure between special education kids and regular ed kids not only for my district, but for my school.  I know the 6 payment tiers that exist and the formula used to calculate how much extra funding my district for each of my kids for using special education services.  I know what belongs where on all 13 sections of the IEP and how to make a goal measurable. And I know when I am being BS-ed by my district.  I don’t know all of this because of my training…I know it because I live in 2016 and any parent with a computer and the desire can learn the same.   In 1990, my school district certainly was not expecting 1 out of every 6 children attending (or 15%) to have some sort of developmental disability….or for the Autism rates to be 600% higher.   My child’s elementary school currently has about 700 students and about 100 IEPs (last I heard)…all while serving about 29% of their students as English as a Second Language with limited proficiency.  Teachers are stretched thin. Inclusion and LRE are so important for our kids future, yet most regular education teachers were not taught the basics on how to include and teach special ed kids in differentiated instruction or how to manage a classroom where there are multiple children with conflicting accommodations. (ie:  When Johnny gets stressed, he can crumple paper…but Jimmy’s auditory sensory integration issues make it impossible to keep it together when he hears paper crumpling….).  Parents are communicating, educated and knowing the legal hoops to jump through if their children’s rights are being violated.  It is a system that cannot hold itself up and still serve our most vulnerable children to be the most successful they can be.  Parents…please keep fighting for your kids….keep learning everything you can.  Educators…please do the same.  I do not have the answer….I am just hopeful it is found before my children have to move on from the “protective bubble” of IDEA and there are no grown up IEPs.

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.