Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.
W is for What It’s Like
“There is grandeur in this view of life…..from so simple a beginning endless forms most beautiful and most wonderful have been and are being evolved”—On the Origin of Species, Charles Darwin.
A few years ago I attended the funeral of a friend who suffered and died much too young. He was a scientist-a biologist, an activist, a researcher who was respected in his field and likely the smartest person I knew. He was also pedantic and opinionated with a biting but funny sense of humor. This combination engaged even the most simple of us but most of his friends were equally as interesting and I got to numbly stand in a room in Vermont in the dead of winter surrounded by them. “What’s it like?” a friend of his asked me…”having a child with Autism?” For a moment I just thought I was not in the mindset to answer that question but quickly realized I could NOT answer because in all the years I’d not only never been asked that but also never considered it either. It was the kindest thing anything had ever asked me about A2 and perhaps it was the somber tone of the day that rendered me without speech (which if you know me well does not happen often) or maybe I had always been so caught up in the action oriented nature of having a young child with autism that to contemplate that would stop me in my tracks and make me crumble….or perhaps in the moment I felt guilty for even thinking I would crumble and considered myself so lucky to still have those I loved around me regardless of circumstance while my best friend was grieving the loss of his partner……so I excused myself instead. What I have decided over the years is that it is a bit like A2 contemplating this fountain. It is weird and fascinating and wonderful and I have no idea how it really works or how it got there. I notice every single droplet from the ones that predictably slide down the posts to the ones that spit out to collectively leave me standing in a cold puddle over time that leave my toes numb without notice until its too late. There is no warning when the water will turn to an exciting spout of beauty creating a soft rain and visible rainbow or when it will create bursts of rainy arches that I cannot immediately escape leaving me far more drenched and colder than I want to be and on opposite sides of the fountain from whomever was standing near me. So Trevor…..that is what it is like……Thank you for asking
About 9 years ago when A2 was 3 years old, he attended a social skills group with a speech therapist and 3 other minimally verbal children. A2 was by far and away the most pleasant and social of the 4 kids in the group and at that point did not have an Autism diagnosis. I didn’t know WHAT was happening with him for sure. 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 adults 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. I had not. It is a memoir written by a father about his wordless daughter. 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 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. And 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 had 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 his 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. At this point, we had an autism diagnosis and I was in the throes of learning to advocate for my child in ways that rocked my world. Leigh was there to say the things I couldn’t say. Then there was another (which is no longer 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):
PERSPECTIVES FROM THE SPECTRUM
MEMES/HUMOR/KEEPING IT REAL
ALL THE REST
Ableism: discrimination or prejudice against individuals with disabilities
“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 standing behind me and flapping excitedly anticipating a single engine plane landing from the observation tower at the regional airport where we all stood.
She licked the open space between her missing teeth and twisted her body from side to side as 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?'” 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.
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 we worked tirelessly toward remembering to say during his seventh year of life. Ironically, seven has been his automatic go-to age ever since then, especially when he is distracted.
- 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 a little like my brother when he was a baby.
- 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.
Is it possible that my intervention was sending a negative message to both A2 and the little girl because I didn’t fully accept where my child was in the moment? Because I expressed 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 neurological/mental health 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 usually because 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 right now what it means to be inclusive, to accommodate and how language can affect disability rights, especially when it comes to Autism. The growing pains with this process are palpable. Subcultures and their preferences exist in any community often elusive to the general population but 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 taught and “autistic” is being used as a taunt by kids who are none-the-wiser that it is culturally a preferred term without negative connotation. 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 and he 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.
These are complicated times. There are many, many voices that make 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 and it should be apparent to anyone who stops to think for a moment. 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.
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):
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!
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.
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.
Lots of people have jumped on the November Thankful Challenge on social media. I see people try for 30 days to declare the things in their lives for which they are grateful. As a therapist, I can tell you its an excellent exercise in mindfulness–a way to connect and be present for those things we tend to take for granted. Soul soothing salve in the bustle of every day life. It’s also helpful from a cognitive-behavioral standpoint. If we take a few minutes every day to reflect on the things that are going right amid the trashcan fires of life all around us, over time we can actually retrain our brains to become more centered, less reactionary and supposedly just happier in general. It becomes a good habit. So, why don’t most people take appreciative stock every day? Well…I believe its because most of us have what we need (most and need being our operative terms.). So even if you don’t have much, you DO probably at least have a roof over your head, access to clean water, some kind of education and likely at least one person in your life who cares when your birthday is. When things are going OK and at least that bottom floor of Maslow’s pyramid is built, we can still say, “well….at least I have my health” or “I’m lucky I have food on the table”. This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society and when we are not bombarded by rampant poverty in the streets or young people regularly dying from things like dysentery or malaria. Yet as special needs parents or as a disabled people, we are often expected to display this type of gratitude and grace in circumstances that at times feel this imbalanced.
I have somehow won the life lottery…and I didn’t do anything to deserve that any more than some starving, orphaned toddler in a war torn country did to deserve his lot. There are many people who might look at my family and think otherwise since we were dealt the hand of having a child with a disability. We have a life that can be exhausting and lonely and sometimes just very scary but what I find is that when life is that way, it is rarely because of anything my child has done or his disability itself…its more about the circumstances around him that prohibit understanding, access, equality or equity.
And thus the rub of the special needs parent and the expression of gratitude toward professionals who serve their child.
If a surveyor asked my child’s providers,”Do you think A2’s mom is grateful for the services you provide her child?”, my guess is that at least 80% of them would answer “no”. They would be completely wrong, but still. If that same surveyor could time travel and go back year by year to 2007 when A2 first started getting help and ask the same question, I suppose that the percentage who would answer “no” would shrink in proportion to year asked. Regardless of how many holiday gifts, number of hours I volunteer, amount of money I donate, number of thank-yous doled out, at this point I am still going to be seen as a wistful pariah.
As A2 ages and the disparity in needs between he and his peers grows, so does the need for advocacy. There is a pervasive belief system that exists that keeps those who are disadvantaged in some way from asking for more and it is through the guise of gratitude and the false belief that the basics are a form of entitlement. You are lucky to get what you get….even if it is not meeting your needs.
- 20 sessions of speech therapy for your non-verbal child? Well…at least your insurance gives you that much…some people can’t get speech therapy approved at all!
- I’m not really seeing progress in my child, but the aides are nice to him and he seems happy.
- Keep a mastered list of goals to probe yearly? You’re lucky we can even work on her goals with as many as she has.
- He doesn’t need a bus aide. He can make noise so its not like it would turn out like that boy who died on his bus because they forgot about him all day….
- Sorting nuts and bolts is a career for lots of people. She may have an above average IQ but she’s lucky anyone is willing to take a chance on her
- Kids just love him here at school, but no….we can’t tell you who any of them are so he can invite them over and extend those friendships to the community. At least kids play with him here, that says a lot about the kind of person he is.
When exposed repeatedly to systemic issues that shame you into to accepting less, you get a little crisp when it comes to the process of fawning over people doing the jobs they chose. Can you imagine for one minute being OK with your child failing a subject at school and then thinking, “well…at least no one is hurting him there”? No…those things are not interchangeable. Ever. Or what if your child’s class was going on a field trip bowling, but because they didn’t have bowling shoes in her size they just didn’t even tell you about the trip? You are probably going to get more than a little angry…and maybe even angrier when they suggest that all the kids who wear a size 6 shoe will get to go to for a tour of a widget factory instead at the end of the year, so what’s the big deal? As parents, we want to always feel and show gratitude to those who we entrust our children…but when trust is bent it dulls the surface.
At the end of last school year, one of the school administrators let me know just how stinkin’ cute A2 is and how he brightens everyone’s day and how much kids just love him. “He has made so much progress..he comes right up to me now and always asks to see the PA system!” she exclaimed. I nodded and smiled and said nothing about how platitudes like that can ruffle the feathers of pre-adolescent special needs parents because, you know….gratitude and grace. We have to show ours a bit differently. It’s not that we don’t like the compliment, however very soon, that go-to strength of his of being little and cute, the thing that draws people to him and keeps people friendly will be gone. Drinking out of a sippy cup with a full beard is not adorable….it will be confusing and odd to people who don’t know him. And it scares the hell out of me. So instead I say nothing for fear of not seeming grateful for at least that.
“Yes, progress.” I say. “Though I worry. He still cannot read, we still have not cracked that code and he only has one more year here”. She side eyed me with a friendly smirk , lifted her finger as if to gently stop me and said “Mrs. ASquared, you GOTTA focus on the positives. You just gotta. He’s a great kid”.
Do I though? I keep getting taught that focusing on his deficits is how we move forward. And by the way…Yes, I do….and I do it all the time….but not for the purpose of making sure other people can see the gratitude. I unfortunately don’t have enough energy anymore to make others feel good for doing their job . Its not to be cruel, its so I don’t lose sight on how to do my job.
Focusing on the positives is why I have to advocate and ask for more. More out of the box thinking, more time, more energy, more inclusion. I see what he is capable of achieving all while being systemically reminded in quarterly meetings of things he still cannot do, how services won’t be expanded to accommodate that fact and how planning for a future where if we are lucky, he will get to be a marginal member of society. My child lives in a society that sees the deficits, that sees the differences and believes that the slightest hint of meeting his needs because of his differences is an entitlement. A society that believes that being adorable is a strength. A society that makes heroes and saints and examples out of others showing my child dignity, when they come to work or are being a friend. A society that doesn’t hashtag abuse, neglect, bullying and even murders against children like mine.
So team members…if you are confused about my level of gratitude for your involvement with my child, don’t be. I am never short on gratitude, and when my child is happy and progressing, what our collective efforts are doing is working. I too have a job where the pay is low, the paperwork is tedious and 100% of my work is about helping other people. I too am rarely told thank you but that is not why I do what I do. I am trying to make the waves to change systems and influence the way the world sees people who are at a disadvantage. By accepting less simply because we are told we should be grateful for what we get is the dysfunctional thinking that will keep things inequitable.. always. I am doing the future of disability advocacy and everyone who works with kids like mine a disservice by this act as well. When I am sitting on this side of the table, its my job to check and double check your work, ask questions and tell you when something isn’t working. That is not the opposite of gratitude, that is showing you that what you are doing matters. Its the ultimate compliment. My kid is your boss and I am trying to teach him to always get what he needs based on HIS different needs in this world.
I’m just trying to do my job as his mother, one that is universally never the recipient of gratitude is often met as if I am a villain and yet is still the most rewarding job in the world.
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.
Ok. Emily can only take credit for the first part….
One year ago this week, I was given the honor of speaking in front of my religious congregation during the High Holidays on the topic of hope. I stumbled on the video link a few weeks ago….and found the old me…the me speaking from my heart a year ago to be jarring and familiar. This is the (abridged) transcript from that speech. I am posting this so I can link to it in the coming days….to tell you of the what-came-next…..
I’m here to share my story of hope. My family and I have been congregants of BT 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 out here in the audience who feel the same way that they can recognize that 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. And it shows a side of hope that’s hidden away that only parents with children with significant disabilities can understand. That 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 that 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’s not optimism. Its not about expectation. I have realistic expectation for my child. Its 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. Its part of our human condition. It 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 even his driver and he wasn’t sure what state he was going to find him in. 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 I 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 who are 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.
…..stay tuned for part 2…one year later…
*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)
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…..
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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