Autism

Autism Awareness Month. Day 1 2017: A is for Ableism

Jaycee Kemp4 Comments

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Ableism: discrimination or prejudice against individuals with disabilities

(https://www.merriam-webster.com/dictionary/ableism)

“How old is……are you?”

The little girl in the pink rain boots corrected herself as her eyes darted from mine immediately to A2’s. He was staring out the window of the observation tower where we all stood and flapping in excited anticipation of a single engine plane landing right in front of us.

She licked the open space between her missing teeth and twisted her body from side to side. I looked back to A2 since he wasn’t answering her.

“A2…..this little girl wonders how old you are.” I said to him as I touched the corners of my mouth as a starting cue for a long /e/ sound.

“Sevuh.” he said without looking way from the window.  I touched his back and then his chin and he looked up.

“Eeeeelehhhvuh” he replied, eyeing me closely for the cue.  I looked back to the girl to see if she understood.  She bit her lip and looked up at her own mother.

“Yes, you ARE eleven!” I clarified and then paused to gauge interest.

“A2….you could ask her ‘how old are YOU?'”  I stated in a futile attempt to redirect his attention from the excitement of a helicopter taking off from a landing pad.

Hannah was 7. And her brother was 5. And her other brother had his birthday this weekend….and he is 3. And her uncle lives in North Carolina and he came in to town for the party and now he was flying away back home. And there were green cupcakes at the party. With rainbow sprinkles.

STOP.

When you read this, what do you take away from this interaction?  How did it make you feel?  Did you picture yourself as the parent?  As the little girl in the pink boots?  As A2?  Or maybe you pictured yourself as the mom of the girl?

Since I was there, I will share my perspective.

  • Had A2 been in almost any other physical environment, he may have been the one approaching the girl rather than the other way around. He may not have automatically told her “seven”, the oddly missing number from his rote lexicon from one to ten.
  • I saw an opportunity to practice social language and articulation. Another child asked him a direct and appropriate question in a shared environment.  In our society, it is the norm to make conversation in environments such as this. Even though he was distracted by something exciting, this is still the norm.
  • I saw another child who appeared to not understand what A2 said and also appeared to not know what to do next.  It then became my role to subtly articulate for the other child and to cue my child’s part in the conversation.
  • When I saw A2 was too distracted to engage in anything socially meaningful to this little girl, I engaged her for a bit to see if he would enter in at any point.
  • I was thrilled that this young child caught herself and re-evaluated how she wanted to ask her question and presumed A2’s competence by asking him directly.
  • I felt frustrated A2 missed a social opportunity.  I felt sad he would rather flap his hands.  I felt gutted to get more details about a 7-year-old-stranger’s weekend than I have ever gotten from my own child about his day.

I imagine the little girl’s perspective looked something like this:

  • I don’ t understand why he talks like that.
  •  I know when people want to know how old I am they ask me. They don’t ask my mom.
  •  I wonder if he wants to know my uncle is flying a plane?
  • He didn’t know how old he is.  I wonder why he won’t look at me after I asked him a question…I feel uncomfortable now.
  • I’m glad that lady asked me about my weekend.  I love cupcakes with sprinkles and was glad I could share my favorite part.

A2’s perspective might be:

  • Humming of airplane motors sounds like the humming in my body.  The propellers move so fast, but that is how I see so many things…its like I can see each blade when they spin.  This is the only place I get to see anything like this! I’m so excited!
  • Mom is tapping me.  She wants something.  When I respond to her, she will then leave me alone and I can finish watching.  I better look up.
  • That little girl has nothing to do with this experience right now.  Why does she need to know how old I am when there are machines flying into the sky?!

Of course, I have no way of actually knowing the perspective of the little girl or of A2. I can only assume according to my own interpretations in the moment and based on my previous experiences.  I may be completely wrong.  The only perspective in which I truly have full insight is my own as evident in the richer description.

WHAT IF…….

Is it possible that my intervention was sending a negative message because I didn’t fully accept where my child was in the moment?

Because I expressed honest thoughts and feelings over the scenario, does that mean I perceive my child who happens to be disabled as less?

Were my choices in this situation potentially fueled by own differences?  Would it matter if they were?

If I did nothing, would the girl have pressed on?

Would her mother tell her “come on, he can’t answer you” and leave before the little girl could wait him out?

Would she have learned that in the future not to bother to ask questions of kids who flap and have trouble speaking?

Should I have insisted he turn from the window?

Should I have answered everything for him?

Should I have explained what she could do to connect with him in the moment?

Should I have insisted the mother help her child connect with mine when he didn’t answer?

Do I represent all mothers of all autistic children?  Mothers of all children with Autism? All Autism Moms in this situation?

Does she represent all 7-year-old neurotypical children?

I am a parent.  I make many decisions for my minor children every day. I make them do things that go against what they want to do because that is an uncomfortable reality of parenting.  Sometimes I give in to things when I am feeling tired or lazy. Other times, I just make the wrong decision or don’t respect their feelings and apologize later. The fact that I am literally my child’s interpreter due to his disability complicates this parenting thing because I cannot untangle the ball of cords that being a parent to my child vs. being a parent to my autistic child is. I have no choice but to parent him from the only perspective I have day in and day out just like every other adult given the privilege of parenting. The thing I know for certain is every decision and action comes out of the intense and blinding love I have for them.

As a society, we are all learning together what it means to be inclusive, accommodating, and how language can affect disability rights.  The growing pains with this process are palpable.

Subcultures and their preferences exist in any community and are often elusive to the general population. But these issues tend to sit right below the surface for the group affected, creating a dissonance that effectively can halt any movement forward outside of the culture.

A simple/not so simple example:

Many adults on the spectrum prefer “autistic” as they do not see autism as a disability but rather as a difference.  Yet, in academia, person first language is still being regularly taught. Some parent perspectives dictate a different mindset around autism preferring “has autism” and would never refer to their own child as autistic. As a professional in the field, writer and parent, I trip over how to refer to autism, my kids or myself for fear of sounding ableist and this nuance could alienate the very community for which I want to advocate, regardless of my perspective in family systems theory.  When asking my own kids what they prefer, one says “yeah” to either option leaving me as his parent with the choice. The other has told me he doesn’t want to refer to it at all because he doesn’t care, doesn’t know why it matters or why he would ever have to explain it to anyone to begin with.  Clearly, this hot topic within our autism community, this invisible topic to the general population, is a complete non-issue to my boys.

It is all about perspective.

There are many voices making up the autism community.  There is a tentative balance in how we talk about autism and how we approach the disability perspective in the community. Perhaps it is because there are some great, big general rules of thumb when it comes to respecting individual differences and abilities. Perhaps it is because disability voices should get precedence as representative to their individual needs and possibly the needs of others.  Perhaps it is because sometimes those individual narratives are different from the realities of many families and it becomes difficult to separate this inconvenient truth when there are no other options.

My goal as a parent is to give my children as many opportunities to be successful and independent as they can be which means the choices I make for them as I google how to unwind that mess of cords will be based on their individual needs and the options and resources available. I also recognize that we do not live in a vacuum.  My experiences and access and circumstance dictates certain necessities.  I absolutely cannot expect that society as a whole will know or understand how to accept and provide the individual needs my child has based on his disability when I am not even certain I always know what they are.

There will always be Hannahs in pink rain boots who approach disability as a curious difference.  Whether she grows up with the same perspective is up to us as individuals, as caregivers and as a community in these brief moments. The one thing I know for certain is we are evolving toward a collective understanding from many different perspectives and these perspectives come from a place of respect and love. Almost always.  We all have to be better.

Day 1 2015: A is for Aides

Day 1 2016: A is for Advocacy

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

Image Jaycee Kemp5 Comments

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.

Autism and the Dentist: Top 5 Tips for Successful Visits

Jaycee KempLeave a comment

How in the world has it been 6 months since I have taken the kids to the dentist? After a rousing success this fall, I thought I’d share this again in hopes we can recreate using my own advice! Any tips or tricks for your kiddo at the dentist?

Jaycee Kemp's avatarRunning through Water

**DISCLAIMER**.  The first half of this is the How Did We Get Here part.  The second is How Can You Maybe Get Here part.  Feel free to scroll to the second part…I promise you won’t hurt my feelings.

“How’d it go?”  I hacked out with the phone resting between my ear and the bed.

“Well,” my husband hesitated, “After he bit through the little mirror thingy and puked all over the dentist she told me that you should bring him from now on since you have more control”.

I usually took A2 to all medical appointments but had succumbed to a virus that resembled the plague and the only thing worse than me having the plague is A2 having the plague.  Normally, Mr ATeam and I are a pretty good team when it comes to him but one area I quietly held resentment was having to be the heavy when…

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

Jaycee Kemp1 Comment

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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….

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

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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

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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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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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