Self-preservation is a wondrous thing. As innate as the need for food, drink, shelter, it an automatic response to the obstacles we face every day. The desire to keep ourselves and our loved ones safe is a powerful and sometimes misguided force. When I use the term misguided, make no mistake, it is used in the most positive way. There is no better example of self-preservation than the tendency for a parent to project and possess the complete certainty that their child is going to recover from an autism diagnosis.
You see, there is no other alternative.
I experienced this first hand. When my twin girls were diagnosed shortly before their second birthday, after I got over the initial shock, I immediately kicked into survival mode, for my girls and for myself as well. The fight or flight response that I experienced fueled me. The rush of adrenaline strengthened me to continue and it also allowed me to convince myself that my kids would beat the odds, to defy the grim prognosis, and be OK.
Ok, maybe not be OK. Because from the moment I realized the girls had autism, I immediately recognized the severeity of the situation. But I was completely convinced that they would make gains, and progress to the point that they would be able to live a full and productive live, in spite of their diagnosis. There was no one, in heaven, or on earth, that could have convinced me otherwise. In hindsight, that was the best thing that could have happened, to the girls, and to me. There was no other way to proceed.
So there I was, venturing into the world, with these painfully impaired kids, and an equally impaired, however well intentioned, prognosis of their future.
I found myself quite irritated by people that did not share my optimistic attitude. However, I was always realistically optimistic, or at least I thought I was. I can remember an incident in particular. We were in a major mall in New York City. It was shortly after the girls diagnosis, over twenty years ago.
So there we were, the girls were dressed in their customary color coordinated outfits, with bows in their curly brown hair, looking as cute as ever. It was a quiet day. There was no hand flapping, no rocking back and forth, and no bouts of uncontrollable crying.
The girls were well behaved too.
Suddenly this attractive young woman, dressed in black, carrying a stack of forms, approached me.
“Hi there,” she said. ” I noticed your beautiful daughters, I was wondering if you would be interested in having them do some modeling ?” To which I responded, ” thank you, I should tell you that the girls have autism.”
The bright ear to ear smile on her face quickly morphed into an open mouth look of shock. It was as if she had a physical reaction that she had no power to conceal. “Oh, I am so sorry,” she said and abruptly walked away. She did not give me a chance to respond, which may have been for the best, for both of us. I felt the bitter sting of intolerance, a feeling I would fast become accustomed to.
Clearly, little Miss. Clipboard didn’t get the memo. The girls were going to be fine. Ok, maybe not fine, but they would get better, that’s right, much better. Her response angered me, but also planted a seed of doubt, in the otherwise rose-colored reality I was desperate to live in. As time passed, I was disappointed to find many seeds of doubt made their way into my garden of denial.
I can remember another incident when one of my daughters was in the hospital being prepped for a minor surgery. She was about 4 years old and having a melt down. The nurse was so kind, trying to get her ready for anesthesia, moving as quickly as she could. She asked me if I had any other children, and I told her that her twin also had autism. And there it was again…that look of horror. But this time there was true concern and sadness as well. The person who seconds before I felt was being so kind, had now just irritated me beyond belief. I remember saying in my customary sarcastic fashion, “they are not dying, they are just autistic.” Just autistic….She was smart enough to recognize my response was that of a mom desperate to perpetuate a reality that was only real to one person, me. Another seed of doubt added to what would soon become my new reality.
So the question arises, what day did everything change? When did I make the painful realization that maybe things would not go as planned, maybe the girls would not make the kind of progress that I was so convinced they would.
Was it the concerned looks that I would get from their therapists when I asked about their progress? Maybe it was the multiple IEP goals that needed to be revised due to lack of progress. Perhaps it was the continued difficulty we experienced when we were in the community. The milestones that remained unmet. The painfully obvious lack of significant progress as compared to their classmates, other kids on the spectrum. All those times when I awkwardly pretended to check my phone when the conversation turned to other kid’s accomplishments, graduations, cheerleading practice, dance recitals. The numerous occasions I excused myself to use the ladies room just so I could escape the torture of being reminded what my children’s peers were doing, and of course what my girls were not.
The answer was becoming clear, there was no specific day that everything changed, but more like a series of events. Goals unmet, expectations modified, plans changed. Disappointments dealt with.
It was as if the universe was gently but methodically nudging me in a direction I was desperate to resist.
I needed to come to terms with the reality of my girls level of disability. Admittedly, when it came to my girls potential for growth, I was not the sharpest knife in the drawer. But in that situation, who could be? It was a completely natural and required tendency to think you can will things to be, make your kids better by declaring it so.
After all, isn’t that what parent’s do, isn’t that what mom’s do? We make things better, we bandage scrapes, we calm fears, we check for monsters under the bed, we chase away the Boogeyman. We cure autism, or at least we try to.
I can remember the meeting with the nationally renowned developmental pediatrician the day she gave me the news. She explained the girl’s disability in terms of their educational life. She said that the girls would either be able to attend a regular classroom, an integrated class, or a self-contained classroom. Many years later I met a neighborhood mom who had a son on the spectrum, who also got the school analogy from the same pediatrician. She said, “wasn’t her explanation a gentle way to help you begin to process the diagnosis?” What I had originally thought was an evasive, cop-out explanation, I later recognized as a thoughtful gesture. It was easier to visualize your child’s disability in terms of their school life than it was as there life as a whole. Nudge…..
Because my girl’s disability is a severe one, they still struggle, as do I. More than twenty years later, I still find myself becoming enraged over what they have been dealt. The socially stigmatizing behaviors, the bouts of self-harm and aggression, the poor communication skills, they became our companions, as unwanted as a third wheel on a first date.
You see, to add insult to injury, I could not have kids for ten years, then after the assistance of infertility treatments, I had my girls. The anger I feel over my girls diagnosis, in light of how I struggled to have them, can still consume me with with rage. However, I do know that there is no such thing as coincidence, so I accept the notion that this was supposed to be my girls autism, my family’s autism. Some days that consoles me, other days not so much.
So, by necessity, I became a glass half full kind of girl. The partially acquired skills, the slight improvements that family members observed, the subtle changes, they became the consolation prize. But a prize nonetheless. You see, you can still fill up a bucket with half glasses of water…it just takes longer…and I’m not going anywhere.
And surely there is something to be said for acceptance, and arriving there in a timely fashion. I admittedly arrived late to the party, but once there, I was a full participant. In life, we don’t know what we don’t know. I do not know my girls any other way. In a situation like this, that is a good thing. Now, acceptance does not mean giving up. I was once told that we accept our kids the way they are, we love them, and then we try to change them. Support them in their weaknesses, rejoice in their successes, facilitate positive change, growth, and inclusion to the extent possible
I feel an important part of acceptance is education. Because autism is a spectrum disorder, individuals with the same diagnosis can vary tremendously, from the socially awkward, but otherwise typically developed, to the profoundly impaired, behaviorally challenged, with cognitive deficits that prevent the inclusion that one might hope for. Unfortunately, my girls fall into the second group.
You see, autism comes in all shapes and sizes. For as many kids with autism I have met over the last twenty years, that is the number of different presentations it offered. This should be an important part of the modern day narrative on inclusion and acceptance. People should know that there are two very extreme ends of the spectrum, and the differences between them can be enormous. Acceptance for all degrees of the condition is imperative. We are not there yet, but hopefully we are fast approaching that day.
Finally, I want to stress that kindness is key. Kindness for the individuals, for the caretakers, for the direct service providers that care for and nurture our loved ones. An accepting smile instead of the intolerant stare, an offer of assistance as opposed to an awkward departure, a simple question rather than just watching the spectacle, don’t we all deserve this level of compassion? The answer is clear, we are all in this together, and should all hold each other up. We are stronger united than we are separately. Just like the preschoolers holding hands on the school trip, to be safe, and so no one gets lost. Being lost sucks, for all of us.
I often say things are not how I thought they would be, but they are what they are. Acceptance and celebration are imperative for life. Hope for continued progress, hard work, laughing, crying, planning, and loving. You must always have hope. It has served as the roadmap for our journey, and as sure as the most trusty compass, it has never let us down. So I will keep using my half-filled glass, and I hope you will too.
Johanna Cascione is a mom of 22 year
old twin daughters with severe autism,
and a first-time author of an autobiography Worn Like A Badge (published under the moniker, J L Verita).
Worn Like A Badge recounts Johanna’s realization that after a 10-year struggle to have children, they both had autism. This discovery was almost too much for her to bear. Being faced with no
alternative, Johanna ultimately found the
courage to stand on her father’s shoulders, showing the strength of
character her family has relied upon for so long.
She struggled with extreme isolation and debilitating depression as a result of her girl’s diagnosis. Johanna’s basic need to acknowledge autism, even when other family members preferred to deny it, gave birth to a stronger, more resilient person.
Now, Johanna’s primary goal is to raise awareness and acceptance for
individuals with autism, in particular, the individuals who are severely affected. She strives to provide information and insight that will ultimately make the road less difficult for others to navigate. But most importantly to show that strength, kindness, and humor can conquer anything.
To follow Johanna check out the links below:
Book: Worn Like A Badge