The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy….I would imagine it’s the bittersweet joy of having children…watching the transformation from innocent Angels to inhabitors of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”. I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer….as those other children blossom from midlings to Ivy League applicants….A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”. It’s not natural to pray you outlive your child….but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.
Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)
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
T is for Teachers and Therapists
112. A2 has had a total of 112 different teachers and therapists in his short 11 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 105,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact on my entire family’s lives and for all of them, I am grateful.
A2 was about 2 years old in this photo. Debbie Jo was one of the first handful of professionals to work with him, and at the time, I had no way of knowing this fact. She was a paraprofessional in his early intervention program and always made sure to seek me out when I would come to pick him up to give me feedback about his day. When this post was first published, she was very ill with a long bout of cancer. Despite her county job, insurance, COBRA and her life savings eventually ran out. Despite giving of herself and opening up her home to those less fortunate, at her most desperate moments, because a GoFund Me account was set up to help with medical expenses, I would have known nothing about the exceptional kindness and generosity she gave to others throughout her life other than that small blip on the map when my child showed up in hers. Debbie Jo died last year and I pray that it was with peace given the level of selfless life she chose to lead that I was never aware.
We fight for our kids. Many times that fight is with teachers, therapists and administrators. They chose their careers and they have a job to do. The are human beings. We know the people who are in this for the good fight and we know the people who should have left years ago. We know the people who don’t get it. We know the people who burn the candle at both ends and we know people who have dropped the ball. I have fought many of these people who teach my child, but typically as collateral damage in a system that is failing helpers and victims. Fight…fight, fight SO HARD for your kids. ADVOCATE like hell for yourself if you have a disability. Don’t be afraid to call helpers out, but BE FAIR. Ask to see data. It is your right to see it. It is your right to question it. Do your research. If you have an instinct there is a problem, be sure to tell them you are coming from that place rather than accusing them…but again, ASK, ASK, ASK how to be reassured. In their world, no matter how destroying it is to us, your child may be a learning experience. And if that is all they can offer–it is all they can offer.
In our world…we only get one time around. We don’t get a do-over. Recognize their human-ness and recognize necessity and try to create the most cohesive balance.
O is for Obstinate
All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction. No warnings. That should teach him! After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity. I got a clear cup, drew some lines across it and found a bag of marbles. Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day. If we got to the top (by the end of the day), he could get a dessert after dinner.
Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.
I had someone close ask “Don’t you think it might not be autism? Don’t you think it is could be his personality?”.
“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?” Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment. “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?” A four-year-old. Clinically, that would be a much, much bigger issue than autism.
Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time. A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over. Did we create some of this rigidity with him because of this? Probably. Did I have any idea that would be possible then? No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand. Was it worth it? As a parent with limited understanding and resources I would have to say “yes”, because he displayed rigidity before that. Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible. We have lots to continue to learn.
F is for Food
This breakfast is 8 years in the making…A2 eats a total of 9 different foods..all presented in a certain way…all brand specific. Starting from 0. He has worked so hard to get to this point and I feel a weird balance of pride, frustration and futility when I see this plate. Feeding issues in autism are common and are outside of “oh, all kids can be picky eaters” or “just tell him if he doesn’t eat dinner, he won’t get anything later–it’s not like he’ll let himself starve”. Because actually….he will. Many children with autism have serious food aversions and feeding issues. The reasons are varied but tend to be due to sensory, texture, medical or obsessive-compulsive issues. Behavioral issues become deeply ingrained in these kiddos when eating is paired with physical pain due to gut issues so common in kids with autistic disorders and can…
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What do you dream about sweet silent boy?
The nights you rise up out of your bed and wander our dusty floors? Are you looking for something you cherished for a moment in that mysterious place between the consciousness of dream and the awareness of waking?
Are you on an enchanted night walk floating through a maze of fireflies and bubbles unaware of the world that holds you back?
Could you be lost navigating the spooky hallway forest, familiar and friendly when the path is lit by the morning sun?
What do you dream about sweet boy?
Those nights your shriek summons me like the siren’s song to find you swimming in your twisted sheets? My soft words are not your anchor. You push me away from the helm with your kicks and punches as if resisting being dragged to the bottom of the sea by the mighty whale you have have come to exact revenge.
How do I teach you to breathe when you emerge from the black water instead of screaming?
You wake gasping for air.
What do you dream about sweet boy?
When you sit bolt upright rubbing the glitter of sleep deeper into your eyes with the fists that once fit in the palm of my hand? You rise with a dreamy smile that does not release either of us until you snuggle in as close as you can. It is how you summon the halcyon to create the calm winds that smooth the waves.
You drift safely on your back.
Do you know you dream sweet boy?
Can you separate day from night? Do your lost words in the light morph into the demons in the dark who suck the words from your cherub lips?
Do nocturnal fantastic birds of flight carry you away and release you from your forced secrets of the day? Are those birds the thing with feathers? Do they chirp the same songs they sing to me?
Do you not dream at all sweet boy?
Perhaps instead you play with angels who speak your native tongue. You drift off to the place where I am not allowed to go with you. You run freely through the fields of joyous detail or you ramble in teary despair in the wings of the worldless knowing you are understood and safe.
Because no matter the circumstance of night, in the morning you wake wide eyed and blinking and peaceful.
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.