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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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.

That one time Saturday Night Live was super un-PC and it worked…

I have no idea how to work our TV…so I have to ask my children to leave it on every Saturday evening so I can watch Saturday Night Live.  I often wonder if I watch it because it is the only time I don’t have someone whining at me that its their turn.  Last night between forcing my eyes to stay open and shoving a handful of popcorn in my mouth SNL aired this skit:

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This is a satire or maybe even a spoof of something that goes on all the time and SNL nails it.  Hear me out on this one….

About a month ago, before this Trump thing just kept getting more and more serious, I read the yuckiest headline ever…

UNDEFEATED WRESTLER LOSES TO RIVAL WITH SPECIAL NEEDS, MAKES HIS DREAMS COME TRUE.

You can read the article here: (http://www.insideedition.com/headlines/14311-undefeated-wrestler-loses-to-rival-with-special-needs-makes-his-dreams-come-true).

Once I moved through being perplexed  why a star wrestling champion would have a life long goal of losing to someone with special needs I realized what it really said.  Which was equally as perplexing and disturbing.

Since this has been so fresh on my mind recently I wondered….is the problem more about douchy people who want attention for being  decent human beings or is the problem more a media and journalism issue?  I pondered this just a bit last week as well when I blogged about Donna, an unsuspecting fast food worker who treated my child with a severe language disorder and autism just like any other patron. In our case Donna is completely unsuspecting that so many people now know and respect her because of her act….and it truly was an act that occurs  far less in our world than one might think. (https://runningthroughwater.com/2016/02/26/random-acts-of-dignity/).  The sensationalizing of reporting overly heroic gestures to include those with special needs is a reflection of our world.  Hollow good deeds and instantaneous 15 minutes of fame is raising the wrong kind of awareness folks…but it sure makes people feel good and it garners thousands of clicks.

Please…do not misunderstand.  Us parents are caught up in a catch-22 vortex.  Watching A2 join in to a neighborhood kickball game only to see the 9 year old neighbor run just slightly slower to retrieve the ball as A2 runs to his base is amazing.  But he DOES run to get the ball and he has gotten A2 out sometimes. The difference is that its not a one time thing.  A2 can be told “see you tomorrow” as an invitation to join in again.  And that 9 year old isn’t walking around to his friends saying “wasn’t that so nice of me?”…at least not in front of A2 or the rest of the world to be overheard turning a regular experience into a charitable yet humiliating one.  I love the idea of having my little guy being an equal part of the game….I even love the idea of the kind gesture of a child making him feel special during that game….I don’t like the idea of him being seen as a charity or a headline because of it.

And that is all.  Thank you Saturday Night Live and Jonah Hill for showing how ridiculous that is.  Go Tigers.

#SNL, #JonahHill

 

 

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.