Special Education

Autism Awareness Month. T is for Teachers and Therapists

Jaycee Kemp1 Comment

Originally published 4/27/17

T is for Teachers and Therapists

112. A2 has had a total of 112 different teachers and therapists in his short 11 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published, lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 105,000 hours on this planet. Some were stellar, life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact on my entire family’s lives and for all of them, I am grateful.

A2 was about 2 years old in this photo. Debbie Jo was one of the first handful of professionals to work with him, and at the time, I had no way of knowing this fact. She was a paraprofessional in his early intervention program and always made sure to seek me out when I would come to pick him up to give me feedback about his day. When this post was first published, she was very ill with a long bout of cancer. Despite her county job, insurance, COBRA and her life savings eventually ran out. Despite giving of herself and opening up her home to those less fortunate, at her most desperate moments, because a GoFund Me account was set up to help with medical expenses, I would have known nothing about the exceptional kindness and generosity she gave to others throughout her life other than that small blip on the map when my child showed up in hers. Debbie Jo died last year and I pray that it was with peace given the level of selfless life she chose to lead that I was never aware.

We fight for our kids. Many times that fight is with teachers, therapists and administrators. They chose their careers and they have a job to do. The are human beings. We know the people who are in this for the good fight and we know the people who should have left years ago. We know the people who don’t get it. We know the people who burn the candle at both ends and we know people who have dropped the ball. I have fought many of these people who teach my child, but typically as collateral damage in a system that is failing helpers and victims. Fight,fight, fight SO HARD for your kids. ADVOCATE like hell for yourself if you have a disability. Don’t be afraid to call helpers out, but BE FAIR. Ask to see data. It is your right to see it. It is your right to question it. Do your research. If you have an instinct there is a problem, be sure to tell them you are coming from that place rather than accusing them but again, ASK, ASK, ASK how to be reassured. In their world,  no matter how destroying it is to us, your child may be a learning experience.  And if that is all they can offer–it is all they can offer.

In our world…we only get one time around. We don’t get a do-over. Recognize their human-ness and recognize necessity and try to create the most cohesive balance.Featured Image -- 1500

Autism Awareness Month. O is for Obstinate.

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O is for Obstinate

All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction.  No warnings.  That should teach him!  After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity.  I got a clear cup, drew some lines across it and found a bag of marbles.  Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day.  If we got to the top (by the end of the day), he could get a dessert after dinner.

Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.

I had someone close ask “Don’t you think it might not be autism?  Don’t you think it is could be his personality?”.

“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?”  Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment.  “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?”  A four-year-old.  Clinically, that would be a much, much bigger issue than autism.

Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time.  A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over.  Did we create some of this rigidity with him because of this?  Probably.  Did I have any idea that would be possible then?  No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand.  Was it worth it?  As a parent with limited understanding and resources  I would have to say “yes”, because he displayed rigidity before that.  Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible.  We have lots to continue to learn.

When Pain Drives Passion. What is Your Story?

Jaycee Kemp2 Comments

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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?

Jaycee KempLeave a comment

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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.  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 repercussions 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.

 

 

Why we do the things we do. The trauma edition.

Jaycee KempLeave a comment

After seeing a thread from another writer today about the topic of trauma response in reference to the state of hypervigilence as special needs parents and all of the universal agreement, I thought I would share this again as winter break winds to a close…..

Jaycee Kemp's avatarRunning through Water

-font-b-Handmade-b-font-mini-kraft-paper-font-b-envelope-b-font-5-8x9cmThere is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I…

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

Jaycee KempLeave a comment
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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….

Jaycee Kemp4 Comments

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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.

Jaycee Kemp3 Comments

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It is time again for the November Thankful Challenge on social media. For 30 days people publicly declare the things in their lives for which they are grateful. As a therapist, I can tell you it’s an excellent daily 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.

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? 

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 have a roof over your head, access to clean water, some kind of education and likely one person in your life who cares when your birthday is.  Those are things we easily take for granted. 

This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society. Things like rampant poverty in the streets or dysentery are not infused in our every day life. Yet as special needs parents or as disabled people, it feels like we are expected to display this type of gratitude of circumstances in moments when it feels just 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 rarely because of anything my child has done or his disability itself. It is more about the circumstances around him prohibiting understanding, access, equality or equity.

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

If someone 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 the percentage who would answer ‘no’ would shrink in proportion to year asked.

For many years, regardless of how many holiday gifts, number of hours I volunteered, amount of money I donated, number of thank-you’s doled out, at this point I am still going to be seen as a wistful pariah to those whom I ask more. So out of self preseveration, I have stopped creating debt and sparkling thank-yous unless I really mean it. And that breaks my heart for everyone.

As A2 ages and the disparity in needs between he and his peers grow, so does the need for advocacy. 

There is a pervasive belief system which 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.
  • 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. As parents, we want to always feel and show gratitude to those whom we entrust our children, but when trust is bent, even a little, it dulls the surface.

A couple years ago, during a conversation, one of A2’s team members let me know just how stinkin’ cute A2 was and how he brightens everyone’s day and how much kids just love him.

“He has made so much progress..he always asks to see the PA system!”

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. It is kind to find the strength. However, very soon, that go-to strength 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 might be confusing and odd to those 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 his current level of adorable.

“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, flashed a knowing smile, lifted her finger as if to gently stop me and said “Mrs. ATeam, you GOTTA focus on the positives. You just gotta.”

Do I though?  

Focusing on the positives is actually WHY I have to advocate and ask for more. It is not for the purpose of making sure other people can see my gratitude. 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 IEP 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. Unfortunately when faced with this frustrating reality, as a mother I don’t have enough energy left over to make people feel good.  I used that energy up in the front end not realizing what lie ahead.

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. There is nothing for which I could be more grateful, just like any parent.

But I understand.

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.

Days of Awe. Mostly Without Feathers

Jaycee KempLeave a comment

Hope is the thing with feathers. 

That perches in the soul

And sings the tune without the words

And never stops–at all

Until it is hunted, killed, braised, barbecued and eaten.

–Emily Dickinson

Ok.  Emily can only take credit for the first part….

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Three years ago this week,  I was given the honor of speaking in front of my congregation during the High Holidays on the topic of hope. When the rabbi approached me 4 months earlier and told me the topic, I was sure I could pull SOMETHING together. I was flattered and thankful for the opportunity.

And then I fully realized my task.

Asking for five minutes of my time to convey what hope was like for me…in what I assumed had to do with parenting a child with a disability suddenly morphed into the equivalent of digging for research for a dissertation. I was not sure what hope meant at all, though in fairness, I am not sure I ever fully understood what hope was.

I stumbled on the video link a year afterward and found the old me. Hearing this stranger speaking from the heart was jarring, yet familiar.

This is the (abridged) transcript from that speech.

I’m here to share my story of hope.  My family and I have been congregants here for the last 10 years.  I have two versions of the story I was going to tell today and I’d like to thank the rabbi for allowing me the opportunity to go rogue and tell a third one instead. 

So, I came here this morning with these two versions of my story of hope, not knowing which one I was going to tell.   And mostly because of Rabbi’s sermon last night on vulnerability, I decided to take the two stories and meld them somewhere in the middle to share my story in hopes that if there are people sitting here who feel the same way, they can recognize they are not alone. 

You see…sometimes its not about being hopeful or hopeless. Sometimes there is this vague middle ground, if that exists, in hope. 

I have a child with Autism and he is a sweet, beautiful boy.   And he lives with Autism.  An Autism that impairs him from a life of independence. 

I’m part of a family who is also living with Autism.  An Autism that impair us from a life of independence. 

Showing vulnerability is not particularly an issue for us because we have to wear our vulnerability very publicly.  I’m also pretty visible in the community, and because of that I sometimes feel like I am the “Autism Representative”. 

So, Side A is extra-super truthy.  It shows a side of hope that’s hidden away. That only parents with children with significant disabilities can understand. We hide away. But by sharing this truth of hope, I learned that being vulnerable or weak sometimes has a detrimental effect on my child…both from an emotional standpoint and also from the standpoint of receiving services or receiving help.  It also sometimes leaves me with a compound disappointment chipping away at my worldview of hope in a world where no one can tell me the outcome of my beautiful boy’s life. 

Side B is the very pretty version and it’s the version you might expect to hear.  Its even capped off with a prayer.  But its inauthentic and frankly on Yom Kippur I couldn’t see standing up here knowing there are possibly families I will be doing a disservice by presenting you with the shiniest, most inauthentic version that I could possibly provide of hope.  So thank you, Rabbi for giving me the opportunity to come and share my story.  To spend months studying and contemplating hope in a way that I didn’t anticipate.  Hope is not optimism.  It is not about expectation.  I have realistic expectation for my child.

It is definitely not the thing with feathers. 

I came across a quote by the playwright Tony Kushner and he refers to hope as a moral obligation.  Through all of this, that made the most sense to me. 

Hope just is. 

It’s part of our human condition.  That quote captures the vulnerability of hope as well. 

Just a few days ago I heard an anecdote that captures the best possible way I can describe what its like to sometimes sit in the shame of feeling hopeless for a perfect child living in a very imperfect world with a very scary and nebulous future.  *It’s the story a man told about his grandfather’s wife dying.  After 65 years, she was his lifelong partner and his driver and he wasn’t sure what state he was going to find his grandfather in the first time he saw him after she died.

So he walks in and says, “Hi Grandpa—how are you?  How are you doing?”  And his grandfather says “Did you know that for $4 I can take a shuttle to anywhere in the city?”

 The grandson says, “That’s great grandpa.”

And the grandfather says, “So, went to the grocery store the other day with a list and I went to the lady at the counter and I said ‘Can you please help me with this list?  You see, my wife just relocated and her new address is heaven.’” 

The grandson sits back and laughs and says, “Grandpa, you always help me see the glass as half full.”

The grandfather sits back, looks at the grandson and says, “No….its a beautiful glass.”  

So, my moral obligation today was not to make you think that those of us who have children not following the path of expectation are hopeless.  And it was also not to come up here and make you believe we are full of hope.  Because it lies somewhere in the middle.  If you are a person who sometimes struggles with hope…please know you are not alone.  Thank you.

On this Kol Nidre, if you observe, may you reflect on what hope means to you in a finite and fragile world also full of love and optimism and come out the other side recognizing the glass.

*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)

Edited and rewritten from 9/2016

 

 

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

Jaycee KempLeave a comment

Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

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halloween

Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

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