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 “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):
PERSPECTIVES FROM THE SPECTRUM
MEMES/HUMOR/KEEPING IT REAL
Memes By Ashley
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 staring out the window of the observation tower where we all stood and flapping in excited anticipation of a single engine plane landing right in front of us.
She licked the open space between her missing teeth and twisted her body from side to side. I looked back to A2 since he wasn’t answering her.
“A2…..this little girl wonders how old you are.” I said to him as I touched the corners of my mouth as a starting cue for a long /e/ sound.
“Sevuh.” he said without looking way from the window. I touched his back and then his chin and he looked up.
“Eeeeelehhhvuh” he replied, eyeing me closely for the cue. I looked back to the girl to see if she understood. She bit her lip and looked up at her own mother.
“Yes, you ARE eleven!” I clarified and then paused to gauge interest.
“A2….you could ask her ‘how old are YOU?'” I stated in a futile attempt to redirect his attention from the excitement of a helicopter taking off from a landing pad.
Hannah was 7. And her brother was 5. And her other brother had his birthday this weekend….and he is 3. And her uncle lives in North Carolina and he came in to town for the party and now he was flying away back home. And there were green cupcakes at the party. With rainbow sprinkles.
When you read this, what do you take away from this interaction? How did it make you feel? Did you picture yourself as the parent? As the little girl in the pink boots? As A2? Or maybe you pictured yourself as the mom of the girl?
Since I was there, I will share my perspective.
- Had A2 been in almost any other physical environment, he may have been the one approaching the girl rather than the other way around. He may not have automatically told her “seven”, the oddly missing number from his rote lexicon from one to ten.
- I saw an opportunity to practice social language and articulation. Another child asked him a direct and appropriate question in a shared environment. In our society, it is the norm to make conversation in environments such as this. Even though he was distracted by something exciting, this is still the norm.
- I saw another child who appeared to not understand what A2 said and also appeared to not know what to do next. It then became my role to subtly articulate for the other child and to cue my child’s part in the conversation.
- When I saw A2 was too distracted to engage in anything socially meaningful to this little girl, I engaged her for a bit to see if he would enter in at any point.
- I was thrilled that this young child caught herself and re-evaluated how she wanted to ask her question and presumed A2’s competence by asking him directly.
- I felt frustrated A2 missed a social opportunity. I felt sad he would rather flap his hands. I felt gutted to get more details about a 7-year-old-stranger’s weekend than I have ever gotten from my own child about his day.
I imagine the little girl’s perspective looked something like this:
- I don’ t understand why he talks like that.
- I know when people want to know how old I am they ask me. They don’t ask my mom.
- I wonder if he wants to know my uncle is flying a plane?
- He didn’t know how old he is. I wonder why he won’t look at me after I asked him a question…I feel uncomfortable now.
- I’m glad that lady asked me about my weekend. I love cupcakes with sprinkles and was glad I could share my favorite part.
A2’s perspective might be:
- Humming of airplane motors sounds like the humming in my body. The propellers move so fast, but that is how I see so many things…its like I can see each blade when they spin. This is the only place I get to see anything like this! I’m so excited!
- Mom is tapping me. She wants something. When I respond to her, she will then leave me alone and I can finish watching. I better look up.
- That little girl has nothing to do with this experience right now. Why does she need to know how old I am when there are machines flying into the sky?!
Of course, I have no way of actually knowing the perspective of the little girl or of A2. I can only assume according to my own interpretations in the moment and based on my previous experiences. I may be completely wrong. The only perspective in which I truly have full insight is my own as evident in the richer description.
Is it possible that my intervention was sending a negative message because I didn’t fully accept where my child was in the moment?
Because I expressed honest thoughts and feelings over the scenario, does that mean I perceive my child who happens to be disabled as less?
Were my choices in this situation potentially fueled by own differences? Would it matter if they were?
If I did nothing, would the girl have pressed on?
Would her mother tell her “come on, he can’t answer you” and leave before the little girl could wait him out?
Would she have learned that in the future not to bother to ask questions of kids who flap and have trouble speaking?
Should I have insisted he turn from the window?
Should I have answered everything for him?
Should I have explained what she could do to connect with him in the moment?
Should I have insisted the mother help her child connect with mine when he didn’t answer?
Do I represent all mothers of all autistic children? Mothers of all children with Autism? All Autism Moms in this situation?
Does she represent all 7-year-old neurotypical children?
I am a parent. I make many decisions for my minor children every day. I make them do things that go against what they want to do because that is an uncomfortable reality of parenting. Sometimes I give in to things when I am feeling tired or lazy. Other times, I just make the wrong decision or don’t respect their feelings and apologize later. The fact that I am literally my child’s interpreter due to his disability complicates this parenting thing because I cannot untangle the ball of cords that being a parent to my child vs. being a parent to my autistic child is. I have no choice but to parent him from the only perspective I have day in and day out just like every other adult given the privilege of parenting. The thing I know for certain is every decision and action comes out of the intense and blinding love I have for them.
As a society, we are all learning together what it means to be inclusive, accommodating, and how language can affect disability rights. The growing pains with this process are palpable.
Subcultures and their preferences exist in any community and are often elusive to the general population. But these issues tend to sit right below the surface for the group affected, creating a dissonance that effectively can halt any movement forward outside of the culture.
A simple/not so simple example:
Many adults on the spectrum prefer “autistic” as they do not see autism as a disability but rather as a difference. Yet, in academia, person first language is still being regularly taught. Some parent perspectives dictate a different mindset around autism preferring “has autism” and would never refer to their own child as autistic. As a professional in the field, writer and parent, I trip over how to refer to autism, my kids or myself for fear of sounding ableist and this nuance could alienate the very community for which I want to advocate, regardless of my perspective in family systems theory. When asking my own kids what they prefer, one says “yeah” to either option leaving me as his parent with the choice. The other has told me he doesn’t want to refer to it at all because he doesn’t care, doesn’t know why it matters or why he would ever have to explain it to anyone to begin with. Clearly, this hot topic within our autism community, this invisible topic to the general population, is a complete non-issue to my boys.
It is all about perspective.
There are many voices making up the autism community. There is a tentative balance in how we talk about autism and how we approach the disability perspective in the community. Perhaps it is because there are some great, big general rules of thumb when it comes to respecting individual differences and abilities. Perhaps it is because disability voices should get precedence as representative to their individual needs and possibly the needs of others. Perhaps it is because sometimes those individual narratives are different from the realities of many families and it becomes difficult to separate this inconvenient truth when there are no other options.
My goal as a parent is to give my children as many opportunities to be successful and independent as they can be which means the choices I make for them as I google how to unwind that mess of cords will be based on their individual needs and the options and resources available. I also recognize that we do not live in a vacuum. My experiences and access and circumstance dictates certain necessities. I absolutely cannot expect that society as a whole will know or understand how to accept and provide the individual needs my child has based on his disability when I am not even certain I always know what they are.
There will always be Hannahs in pink rain boots who approach disability as a curious difference. Whether she grows up with the same perspective is up to us as individuals, as caregivers and as a community in these brief moments. The one thing I know for certain is we are evolving toward a collective understanding from many different perspectives and these perspectives come from a place of respect and love. Almost always. We all have to be better.
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 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.
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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About a week or so before I turned 32 I realized exactly how selfish I was and just how little impact I had but at the time I kept that to myself. For many years I thought it possible I could one day be a leader. However, my cherubic cheeks, diminutive size, my damaged ego strength and my faulty frontal lobe betrayed me every single time. I was a cartoon character. An adult who looked and seemed like a child in every way. Even while playing grown up in my power suits and single karat ring, the truth was I worked in management in state funded nursing facilities selling hopes of a dignified death to desperate families. And they believed me because there was a level I understood vulnerability and how to soothe it as only a broken lady-child can.
On this particular September morning I whipped into the parking lot of the Skatetown roller rink just like I did every morning at about 8:45am. It gave me just enough time to put my mascara on in my rear view mirror and dash across the street to the nursing home to get to my daily 9:00am. As I dabbed the black goo onto my lower lashes, Bob and Tom or Frank and Steve or whoever the goofy morning team people were on that local station, broke in to Foo Fighters to let everyone know that some bone head flew their plane too low to clear one of the Twin Towers in Manahattan and crashed right into it. I shook my head and sighed as I twisted the brush back into its cocoon of gel and wondered if ANY adults knew what they were doing. It was a beautiful day in the Midwest, though I am biased to any September day regardless of the conditions. There is something about the promise of autumn as the slow and beautiful evolution into winter that is tangible visually, by smell, by temperature–such a visceral descent on all the senses toward the bleak and desolate blanket of cold and slush. Or perhaps I just appreciate when all good things must come to an end. As the radio duo blathered on, my assumption was that the plane was a small, single engine private jet that clipped the side of the building because the pilot couldn’t find a Starbucks before takeoff. It was worth being late to my meeting to see how this one was going to turn out, so I pulled out my makeup bag to put on the rest of my face.
At just after 9:00am, as I was thinking about cutting the engine and knocking on one of the 1st floor doors of the nursing home to get in, one of the DJs interrupted the other and there was an awkward silence for just a moment…just long enough that it caught my attention and I did not turn off my engine. “Another plane just hit the 2nd tower. I don’t understand what’s happening.” And neither did I. And neither did the rest of America. I sat in my car and for the next 20 minutes listened intently to verbal chaos. Once I realized no one knew anything, I dashed inside to the tail end of a the daily meeting I typically took over and attempted to lead out of frustration for lack of accountability.
“Did you guys hear about the Twin Towers?” I asked breathlessly setting my purse on the table in front of me. Of course, they hadn’t. They were mostly grown ups and had been at work since 8:30am, like I should have been. “Some sort of accident. It’s probably satellite or something messing with air traffic control.” I of course had no idea, but I was credible enough that people were concerned. I was in-the-know and NOW we have a meeting.
I walked back through the day room where there were two TVs on different stations but both were playing the same footage over and over. There was no single engine private plane losing the edge of a wing. There was a commercial jet filled with people-regular people, that tore into the middle of the North Tower and immediately turned to smoke. People on a Tuesday morning, many of which who were also on their way to their next morning meeting. Though there was still no explanation, if you stood long enough to watch all 17 minutes of footage there were certain things you knew you could probably rule out.
“Becky….Becky…can you turn this crap off and put on my shows?” Poor Pearl. She said my name with such certainty and yet my name is not Becky and there were no shows to put on this morning. My heart leaped and sank at the same time as Pearl’s spindly fingers wrapped around my hand. Her wedding bands spun lopsided on her thin ring finger and the diamond dug into my palm. She would never contemplate what just happened and likely 10 minutes from now would not even remember sitting and watching the thousands of sacrificed souls who would forever change history in our country. I wondered if this is what dementia must be like. I stood there watching this tragedy unfold in footage so telling, so horrifying that even after it was over, it wasn’t over as the smoke poured out of each building as if they were chimneys. Papers and ashes fluttered and floated to the ground like the first snow while bodies surreal while airborne sank as if tied to anchors at the bottom of the sea. Footage of chaotic and confused armies of identical living dead covered in head to toe gray soot were wandering trying to find a foxhole that did not exist. Camera crews live filmed authoritative sounding officers standing in the lobby and strategizing their plan. Community servants looking for leadership while nodding heads, axes raised and probably breathing the same sigh of hope I was that there were people who knew what they were doing and there would be an end of the day soon. But then came the first BANG-loud enough that it was audible on the crappy 20 inch TV. The workers stopped talking and looked around. And then there it was again BANG. And again. I remember none of them moved or spoke a word but they looked to each other silently, uncomfortably. It was that pause that made me know exactly what was falling to the ground over and over outside of those lobby windows. They went back to talking about how to safely evacuate the higher floors with less authority and I was overcome with that same stillness. And just when I had reconciled the first image of the planes crashing and exploding as the least shocking, it was shown again. Those of us who were not afflicted with dementia or a failing memory felt like we were seeing it again for the first time because now it couldn’t be confused with a bad action film that needed to be changed over to the Price is Right. Now we had an idea of what came after as those recordings from ground zero became reality and unfurled into the collapse of the towers rather than a cut to the harried phone dispatcher who is also try to keep concerned citizens out of the red faced fire chief’s office.
And then life went on. I had a meeting the very next day with a former employer who wanted to me to come back to them and were willing to let me set my own schedule and pay my tuition for graduate school which started the following week. I spoke nothing of 9/11 again. An old colleague was sitting at her desk and I waved to her smiling and telling her of my soon to be new-old life and how I looked forward to seeing her regularly soon. She and her husband were important political figures in my city and I can only imagine what went through her mind as I bounced away seemingly oblivious to our hearts in our throats. I didn’t even ask about her son who lived right across the Hudson River. But see…that was the thing. I thought no one knew how to act because I didn’t. It still was far enough away that we could all go on like normalish. I was politically aware enough to know other parts of the world were much more quietly dealing with genocides and bombings and terror every single day. To assume that American lives are so virtuous and valuable as a price above rubies as compared to the rest of the world made me feel conflicted and I wasn’t sure what to do with that even though no one was comparing. I was newly married, had a new job on the horizon and was two years out from a new future and I didn’t want to think about what it meant to have an invisible enemy who could turn my vacation flight into an act of war. And that is what I told myself. And then life went on. And eventually it did for everyone else too. Life wondering exactly how a loved one died or if maybe they would show up some day. Life fearful of invisible people who ‘hate freedom’ and creating terrorists out of neighbors and seatmates in our minds. Life of conspiracy theories about government far beyond just the tinfoil hat people. Life of knowing just how good people can be to one another. Life of knowing just how horrible people can be to one another. And life went on.
**DISCLAIMER**. The first half of this is the How Did We Get Here part. The second is How Can You Maybe Get Here part. Feel free to scroll to the second part…I promise you won’t hurt my feelings.
How Did We Get Here?
“How’d it go?” I hacked out with the phone resting between my ear and the bed.
“Well,” my husband hesitated, “After he bit through the little mirror thingy and puked all over the dentist she told me that you should bring him from now on since you have more control”.
I usually took A2 to all medical appointments but had succumbed to a virus that resembled the plague and the only thing worse than me having the plague is A2 having the plague. Normally, Mr ATeam and I are a pretty good team when it comes to him but one area I quietly held resentment was having to be the heavy when it came to medical stuff. A2’s anxiety is through the roof if he even THINKS its possible he has a medical appointment. For awhile I had to drive a different route to the highway because we PASSED THE STREET to his pediatrician on the regular route and we could count on screaming, thrashing and tears until we were well on the road. He even developed pre-cognitive psychic abilities regarding medical appointments and would wake up with a big pouty lip with his first garbled words of the day being “no doc-er”. On a side note, my cat used to do the same thing for vet appointments. He would already be completely missing by the time I would have the carrier waiting by the door. Maybe my poker face isn’t as good as I think.
I blew my nose without regard to the fact I was on the phone, ” Did you have extra clothes and a towel with you? Is he ok?”.
“Yeah, he’s fine. But I think we should change dentists…what the hell?” I knew he was referring more to his own bruised ego but also to having no idea just how difficult dental appointments were. He had experienced the pre-appointment anxiety and even parts of the wind up to the meltdown but the full on explosion with physical aggression and vomiting was newish for him since this was my area to tackle as a free agent and not a team since I had more work flexibility. He knew appointments were difficult but I don’t think until that day he fully realized my anxiety and careful planning around the twice a year dental check ups, the annual physical exam, the quarterly endocrinologist appointments, annual neuro, GI and orthotist visits. In other words….at least once a month I had to carefully plan an entire day around a doctor appointment because I was never sure how it was going to go down. It takes its toll as a mom.
And the most heartbreaking part for me wasn’t even absorbing A2’s anxiety or physically holding him down or by my own bruised ribs or aching muscles or watching him turn purple and sweaty in hysterics with a handful of my ripped out hair. No…it was always that moment he knew the appointment was almost over and he would turn his head to the nurse or doctor or dentist and through his hyperventilation and tears he would give them a thumbs up. Cru-shing. He knew no one was really going to hurt him. He likely heard all the gentle words about his safety and social stories about visiting the dentist. He likely knew this was something we all have to do for self-care. And yet he also knows he has no control over that autistic brain of his to prevent the escalation. Always a reminder that I just have to try harder for him.
Fast forward to yesterday. 11 years, 2 months, 26 days into A2’s short little place on the planet he had his very first REAL dental cleaning and x-rays. Mild drama and tears….and he is still proclaiming “no doc-er” this morning. But no contusions, no sweating, no projectile vomiting. He even left the office smiling covered in Avengers stickers and with an armful of autism-unfriendly prizes from the prize box (see exhibit A ).
I left the office knowing that my kid had no cavities, no gum disease and apparently he only has one more baby tooth left in his beautiful little mug. So how did this happen? A2 still hates having his teeth brushed at home….this will likely never be something he ENJOYS. Certainly no miracles and no single place to take credit, but here are some things that have helped.
TOP 5 TIPS
- Find a dentist who recognizes sensory processing issues/oral aversions/autism/mental health issues as real conditions and not as being difficult to be difficult. Make sure the dentist and their staff are not fearful and can approach your child in a calm but authoritative way. If you are uncomfortable with any part of the procedure or philosophy or office set up, discuss it with the staff or move on. And it does not hurt if the dentist is eye candy. But that is just for you moms/dads….your kid probably won’t care about that part.
- Consistency and exposure. Don’t NOT take your child to the dentist because you think he will wig out. This doesn’t mean you have to get him in the dental chair right out of the gate if it is too much like visiting with Willy Wonka’s dentist dad. Take baby steps. Bring him to sibling appointments. Bring him in between visits just to say hi to the staff, look at the fish in the tanks, or check out the new toys or stickers in the prize boxes. Read books about going to the dentist. We took pictures of step by step A1’s appointments and made a social story for A2. Reward approximations toward compliance. Document it for yourself so you can increase your expectations of him as you move forward.
- Bear in mind what triggers your kid and plan for it. While you don’t want to sneak attack your kid when it comes to appointments, if you know that too much advance warning will cause perseveration without extinguishing his anxiety or will cause escalation in the days ahead…then don’t tell him yet. Figure out the “sweet spot” for that. For A2, we nebulously talk about dental things between visits and tell him about the appointment in the car the day of. Other kids all is well and good until they see the dental equipment. Find out if there is alternate equipment available and have them use it while exposing him to the stuff that scares him. For years, we used cups of water instead of the squirt gun and suction thingy from hell. We used a regular tooth brush and the toothpaste from home. The dentist wore my sunglasses instead of the big, nerdy lab glasses. And for the love of all things holy….if your kid is a puker…DON’T feed him before the appointment!
- Talk to others. Discuss the issue with a speech therapist to see if there are oral motor exercises that will help desensitize him before visits. Your BCBA or psychologist should also have a trove of ideas or may even work on this as a behavioral goal with him. Talk to the intervention specialist–especially if she is very experienced because it is likely she has helped other families in the past come up with ideas tailored to help specific problems. She is likely the only other person who knows your kid’s quirks or difficulties with compliance and is constantly planning for it. Consult your autism village…another parent might have a helpful hint for you.
- Know Thyself. I no longer martyr myself when it comes to appointments. My husband did not know I was heavily grieving and fearful of these appointments and I think he started recognizing my anticipatory anxiety as such instead of just assuming I was being histrionic. If you need to trade off…do so. It doesn’t have to be a spouse. Your kid picks up on your anxiety even if you think you are cool as a cucumber….but you already know this from other experiences. You see cukes…he sees pickles. Ask for help if you can. Leave the room if he is more compliant without you being present. Do not see it as a failure if you cannot overcome this hurdle. Many families cannot. Contact your local chapter of The Autism Society, Autism Speaks or Board of Developmental Disabilities to help you locate a clinic that is trained and licensed to sedate or restrain as a last resort.
There are some days that my heart breaks selfishly a bit.
Days like today.
As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.
Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things that poke at my side and wake me breathless in the middle of the night that were now tugging at the straps of my mom-suit on sunburned shoulders. I see the young women in their bikinis, laughing and hanging off of tattooed boyfriends and remembered a time where wondering if my thighs were firm enough or if my mascara was running were my biggest concerns. And at the time they really did feel like big concerns.
There are days….just like every other chubby middle aged mom, I just miss my youth.
I watch other moms read their books and drink stealthy mojitos next to the pool as their kids run to them at rest time asking for a hot pretzel. The lifeguards are there to protect theirs while I stand knee deep in freezing water wondering what would happen if I tried to do the same.
There are days….like every other mom of little ones, I wish I could lounge near a pool instead of being on high alert waiting to save my kid from drowning.
I see the moms with wee-ones on changing tables and laugh as I remember being in the same predicament with a wet, slippery cherub in a soaking wet swimmy full of poop and trying to carefully slide it down over a squirmy tushy, not realizing the sides rip off for easy disposal. Today I am trying to find a dry floor free of clumpy toilet paper wads since my guy is now too old to place on a changing table.
There are days….like every mom of little ones, I just wish we were out of the diaper stage.
Once I shook the delirium of the midday sun and made my own mojito at home I felt less like I was crawling toward a mirage in the desert only to be disappointed by more sand.
I feel conflicted by my own selfishness.
I know the bottom line is if he is still oblivious to his differences and is still filled with joy doing what he likes to do whether it suits me or not, then we are still golden. And yet I can feel like I have received a sucker punch to the gut when I watch pubescent girls walk quickly in cliques past him whispering and giggling. I don’t know if my child worries about the same things I do or if he has crushes on girls or if he sometimes grieves his differences. I hope not. That way I can keep my selfishness where it belongs…to myself.
But here’s the thing.
Don’t ALL moms go through this?
We have a sacred ground that feels like it is being broken if we say it out loud or admit to having a bad mom day. Special Needs bad mom days and Typical bad mom days have a different script but definitely the same plot.
- No. I will never worry about my kid having a psycho girlfriend.
- I will never worry about my child’s heartbreak of being socially brushed off because he is wearing the wrong logo on his sneakers.
- I will never worry that I did not raise him with morals or respect for adults.
- I will never worry about whether or not weed will be his gateway drug to heroin.
Those things are equally as important even though there are days I would rather worry about those things. Somehow it became not OK to admit to worry or heartbreak or disappointment for fear of being seen that we somehow don’t appreciate our children. I hesitate to share on these days I must sit quietly for a little too long and think about things a little too much. I am weary of feeling somehow missing our old lives or having a twinge of disappointment over “what could have been” cannot possibly coexist with loving our children with all our souls or appreciating their uniqueness in all their flappy, pool water drinking ways.
See…because you know what I miss too some days? My flat stomach with a belly ring that didn’t look like it was a way to deflate my abdomen. I miss not checking moles and worrying about skin cancer. I miss not having to hire a crane to hoist my chest up in a bathing suit. I miss drinking beer all afternoon in the sun and flirting. I miss working full time and then actually being bored in the evening when I couldn’t find someone to go to the coffeehouse to see some local guy playing acoustic. And I dare anyone reading this to NOT feel like they miss those things too sometimes and that they too would consider trading their situation in to go back for just one day only to realize there would be no way in hell. Because we will never be the same and for that the world will never be the same. This is the backward legacy that our kids give to us….as we gave to our parents.
I often wonder what kind of mom I would be in an alternate universe….and feel very selfish on the sad days. But ultimately, autism or not, I really don’t think I’m so much different from any other mom.