Advocacy – Running through Water

Sometimes We Cry

March 6, 2018February 22, 2019Jaycee Kemp1 Comment

I cried twice today in public.

Once for me and once for him.

I cried within 3 minutes of arrival, but with dry eyes and a smile on my matte face. My diaper bag disguised as a monogrammed symbol of excess rather than a symbol of unanswered questions about wipes and formula and a change of clothes for my adolescent. No one can see what is happening behind my eyes, especially if I cannot see the pity behind theirs.

I cried twice today because sometimes the race to suppress overactive tear ducts in a maelstrom of circumstance and emotion is an unfair competition of tortoise and hare. Sometimes I try too hard and one too many drops pools before one accidentally pushes its way past the checkpoint and spills down a cheek. It is quickly wiped away.

I cried twice today as I held up a wall, socially grinning and making silent deals with God to make no one talk to me. Us moms, we were all in the same place to help, but I was not on the list of volunteers, I figured it out and showed up anyway. Even the words I needed to hear would be a sucker punch to the throat and I would then choke on false pretense that transcends somewhere poetic. I don’t know where transcendence lies exactly–there are so many reasons those tears might seem to be faulty to everyone else. So I hold them in as long as I can and my tongue is held hostage, leaving me still alone.

I cry and sometimes my child sees it happen and sometimes he does not. It doesn’t matter because he knows my humanness anyway, just like he would if his genetic dice were rolled differently. Today he did not see those drops of glistening emotion and I am no less embarrassed, no less ashamed, no less human for it either. And neither is he.

My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. I am tasked to teach my child how to move through this world happily, safely. Though we live in similar space as everyone else, he traverses along some alternate dimension often invisible to all the other children so I don’t really know how to do that. And because of that, sometimes, I cry.

My child’s joy is palpable and my heart levitates outside of my body watching him experience it. He can display the weight of his world, but then laugh at the same time if presented with the right silly face. I am never sure which emotion is primary for him but my own worldview tells me joy prevails because I could never do that. And because of that, sometimes I cry.

My boy wants to be part of the world but sometimes stands motionless with shifty eyes because he knows exactly the problem, which he perceives is him. While I perceive a world that does not know what to do with him. I am certain I am the only one who reinforces that. He worries. He should be worried, because I don’t always know what to do with him either. And sometimes another child sees his light from across the room and without fanfare, crosses over, takes his hand and leads him to the dance floor to be part of the world. And because of that, sometimes I cry.

My boy buoyantly hoots and flaps and has a cognitive itch that somehow seems to be reached by repeating my name over and over and over in the space that should be the calm of our home. Diligent years he sacrificed to learn that what few words he might have are meaningful and understood because we have a limited time to teach the world otherwise. I taught him those things by making sure he always had a response. And in those times caught in an endless loop, he gets one from me, but it might be birthed breech–cord wrapped around its neck-choking and feral and blue in my fallibility. And because of that, sometimes I cry.

I worry one day my boy will read my words and will be hurt or angry or curious or furious and he will demand an explanation and he will walk out of my life because to him these were not words of awareness or advocacy or change. They were the words of HIS life. But that bittersweet day will be the day I will breathe easy with a newly missing piece who can navigate this world alone if he has to. I worry too my boy will be a man…still without the ability for any of that. And in my end, all the sacrificial words spoken on his behalf and judged were not enough to change the world around him leaving him alone. And because of that, sometimes I cry.

These are the words of OUR life. He and I are both doing the parts we think we are supposed to do no matter how imperfectly executed. Because he is my best boy. Because I am only his mom.

And sometimes We cry.

Sometimes We Smile (or Sometimes We Cry:Part 2)

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

November 15, 2017November 15, 2017Jaycee KempLeave a comment

I wrote this one year ago today. As all of our social media accounts have thinned the herd so to speak to show posts from people who are more like minded or we have all done so on our own, there are days I still feel the same. But as people reconsider the last year and perhaps have changed perspective, the divide has grown deeper with those who hang on to their belief systems as history and policy begins to unfold. Many of us have been spawned out into political action to protect ourselves and our interests….on “every side” and may have entered territory and conversations we never thought we could have. As I sit here contemplating my words from 365 days ago, there are days I feel the same about shutting everything down but I glad I did not. I spent a good deal of the summer researching , advocating and educating others on the dangers of removing healthcare policy and instituting new policy that would ultimately devastate the lives of the disabled and ultimately devastate the lives of everyone else too. I was able to talk about how Medicaid actually benefits everyone, even the individuals who never need to access it. My tiny social media reach may not ultimately be influential, but when considering the big picture and ensuring all voices are heard, it is hard to know what the ripple effect could be.

Does social media continue to be a huge time suck and anxiety generator in my world? Yes. But the advantage of influence, the scope of message and finding , connecting and forging new relationships took precedence. But let’s face it….we have all been there since adding a blue and white bird or letter F to the screens on our phones and I suppose we at least all have that in common…

Running through Water

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.

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Autism Awareness Month. Day 2 2017: B is for Blogs

April 5, 2017April 3, 2019Jaycee Kemp1 Comment

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About 9 years ago when A2 was 3 years old, he attended a social skills group with a speech therapist and 3 other “non-verbal” children. A2 was by far and away the most interested in communication and social interaction of the 4 kids in the group. At that point did not have an Autism diagnosis, nor despite my education or background did I even suspect this as the primary issue.

I sat in that lobby week after week wondering what A2 could possibly be getting out of the group given none of the children had any functional verbal language and a great majority of the time the therapists were wrangling to keep the kids all in one spot. After the final session, I sighed at the speech therapist and asked her what she thought was going on with my beautiful boy.

She asked me if I had ever heard of the book Schuyler’s Monster by Robert Rummel-Hudson. A father’s memoir about his wordless child.

I had not.

A2 and I left the speech session and immediately went to the library to find it. I suppose I would have been reading more about parent perspectives of young children with disabilities had a known my child had a disability. But he was 3. He had delays. A gross motor delay, a fine motor delay, a speech delay. He had weird medical issues. He stopped growing. He flapped. But he also looked at me and smiled, knew his name and cuddled. Other than the cache of bewildered parents who sat in lobbies at therapies, I had no connections to others going through similar circumstances. As an action oriented person, I didn’t know I needed to have those connections.

That is until I read Schuyler’s Monster.

In some ways, I feel like that is where my story begins. It started as an easy read because Rob is poignant, funny and his words wash over the pages and get right into your brain. And then….. To put it simply, I was knocked on my ass.

He was telling my story. He was me.

Schulyer was almost exactly A2 right down to the personality. I had to set time aside to read when I knew I didn’t have to be “on” because I wasn’t sure how what I would read would affect me for the rest of the day.

Schuyler has a rare genetic disorder called Bilateral Perisylvian Polymicrogyria. I called A2’s neurogeneticist at the Cleveland Clinic and insisted he himself go back and read A2’s baseline MRI and not rely on the radiologists report. He humored me and alas, A2 and Schuyler did not hold this in common. I finished the book and felt like I was underwater.

What was I going to do without Rob, Julie and Schuyler?

I felt connected to something and yet I never felt so alone in my whole life all because a piece of cardboard filled with paper and a beautiful little girl on the front told me life might not be what I think it is. I was not an avid reader of blogs and at that point was not on social media. I found their blog Fighting Monsters with Rubber Swords and reconnected with his words. Soon, I found another blog that spoke to me much in the same way written by a teacher who had an autistic child called Flappiness Is.

By this point, four years in, we had an autism diagnosis and I was in the throes of learning to advocate for my child in ways that rocked my world. Flappiness (Leigh) was there to say the things I couldn’t say. I then there was another (which is no longer around *2019 update…I have now seen her around..*) that made me laugh about our situation when I needed to laugh about it.

I now had a community and resources I could access whenever I needed it.

I am an accidental blogger. I wrote 3 posts back in 2010 and when I realized I really had nothing to say, I was done. It wasn’t my time to talk. I don’t know if it is really my time to talk now, yet here I am. Instead of following 3 blogs, I follow dozens and all for different reasons. I have met the most amazing folks along the way because of it including the now very grown up, very kind and very inspiring Schuyler. And she seems to be exactly the person I hoped she would grow up to be when I met her as a little girl as typeset words sitting on my couch 9 years ago.

There is no need to be alone if you cannot find “your people” in your community. I never dreamed that some of my closest confidants are people I have never met or only briefly met in person. This list is not exhaustive…..and most categories will overlap, but my resource list of favorite blogs/social media folks you might want to check out (note also most blog links will be the same name on Facebook):

Day 2 2015. B is for Boredom

Day 2 2016: B is for Behavior

Memes By Ashley

ALL THE REST

David Snape and Friends

Carrie Cariello

Love That Max

Finding Cooper’s Voice

Take Another Step

Autism With a Side of Fries

Herding Cats

From Motherhood

Our Adventures with Riley

Special Ev

Walking With Drake

A Day in Our Shoes

Special Books by Special Kids

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

December 2, 2016January 7, 2017Jaycee KempLeave a comment

fullsizerender32 — 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?”

“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!

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

November 15, 2016November 15, 2017Jaycee Kemp1 Comment

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….

November 9, 2016November 10, 2016Jaycee Kemp4 Comments

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.

November 3, 2016November 3, 2019Jaycee 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.

Day 10 2016:J is for Just Ask

April 14, 2016September 4, 2019Jaycee Kemp1 Comment

J is for Just Ask

When I sat down every day last year to do this A-Z project, my biggest take away was the candid responses from friends and acquaintances. Many of whom told me they wanted to reach out, but didn’t know what questions were ok to ask.

I understand that on a few levels:

As an inhabitant of this earth, when we see something we don’t understand or is different, we feel compelled to want to know the “why” or the “what happened”. Perhaps its part of the survival instinct- A primitive way to avoid something that is contagious or preventable. So, often times when it’s not thought about and someone approaches me and says, “what’s wrong with him?”, my instinct is to say back, “rude people are what’s wrong with him”. When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking. After all, I am not sure I am that much more comfortable with a stranger asking me a more direct question either. (ie: “why is he making that hooting noise over and over?”when really I might have absolutely no f-ing idea myself in the moment but I would very much like it to stop). Parents–whether we like it or not, we are the conduit to bridging our children with this society. Many of us are their voices. Even if one person out of 10 who ask are asking to be nosy or rude, if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude. So, instead of “mind your own business” or “whats it to you”, maybe try, “I think what you meant to ask is that you notice that he can’t talk. This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable. There is nothing wrong, but it seems like there is an aspect of his behavior that you would like to know more about. He has Autism and maybe one of us can tell you more”. Pollyanna much? Sure, but the only way we will change the asker’s behavior is by gently alerting them to the problem, offering a solution and giving them a reality check.
On occasion, people want to ask how they can help. More times than that, people don’t realize we need help. For those of us who have kiddos who don’t have a obvious trouble in the community, we move along to normalize our experiences. I have been told that I give off the air of having everything under control and that I don’t need anything. Part of this is for my kids benefit. No one wants a hot mess of a mom in public. Another part of this is because as my job as a therapist in this close-knit community, I feel like I need to maintain a balance of vulnerability and strength. The hot mess part needs to ride in the back seat to ask “are we there yet?”. There are other parents whose kids CANNOT safely be in public places. So, you just don’t see those people. Their life behind closed doors is like an invisibility cloak and they are not getting asked what they need for those reasons. Frankly, many of us have NO IDEA what to tell you about how you can help. My family comes infrequently enough, that to dole out a honey-do list also requires having to walk them through where things are, etc. Ultimately, this means more work. If there were an emergency, they are not enough of a trained listener to know what my child needs if he tells them. When a friend asks if they can watch my kids so we can get out…well, I still haven’t figured out exactly how one explains that you can’t imagine asking them to change a 10 year old’s diaper ….or telling them they probably won’t get to sleep through the night and must keep one eye open when they are sleeping. Sometimes people ask to help but they just don’t want to do what you do need. Their perception becomes that you are unreasonable. It is your own fault you are not taking their help. All can serve as barriers to asking the right questions or giving the right answers for assistance.
People make assumptions instead of asking at all. Just the other night, a young woman I work with asked me for advice in a situation about a member of her not-for-profit youth group. This teenage girl has Autism and when the entire group is together she tends to get very dramatic and will end her tirade by running out of the room. This young woman sighed and said, “She only does it in big groups. Obviously attention….we are thinking of ways to let her know that maybe this group isn’t a good fit for her. It’s not-for-profit, so we can’t tell her she can’t be part of it.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior. The consequence is what sustains the behavior– if no one is rushing out after her, what is the likelihood that this behavior is to get attention and not escape or something internal due to the stress of being in a large group? She wondered aloud if they should contact the girl’s mother to try to figure it out. I wondered aloud what would happen if they just asked the girl herself, since she is her own expert. Use the time and energy to find out what she needs to be a part of the group in a way that works for her rather than using that energy to figure out a way to help her move on. We cannot help but to look at others using our own lenses. But sometimes our lenses are smudged, are rose colored or even broken. By not asking in this kind of situation, others assume they know what is best.

Lets face it. It’s uncomfortable to ask about people who are different than we are.

We may be curious, afraid of coming off as rude or misread other’s cues. We may not want to know the answer, we may not want to change our own ways. We may already have assumptions and think we are right, we may be uncomfortable due to our own scripts about social norms, or frankly, some of us…we may just not care.

For those of us being asked, we may be offended, we may be hurt, we may not want to talk about it. We may not know the answer, we may not want to admit to an issue or call attention to it or we may not want to be reminded. We may not want to be rejected.

So let’s all agree on something. Asking and telling can suck at the outset. Let’s move past it.

Those of us who are Autism Families…we ARE the awareness. How you choose to let that manifest is up to you. In my world, however, if you ask me, I promise to tell you.

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DAD PERSPECTIVE

PERSPECTIVES FROM THE SPECTRUM

MEMES/HUMOR/KEEPING IT REAL

ALL THE REST

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

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

Do I though?

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J is for Just Ask

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