Right now, I’m in the midst of everything being new. New apartment, business less than a year old, oldest kid just moved out — and I’m looking for supplementary income. Something cut and dry, simple, something not at all like business consulting and training. I think I saw something suitable, the “replenishment customer service representative”, at a grocery chain. I think this means the person that puts stuff on the shelves. I hope so, because I don’t think I can handle being a cashier. That would require continually greeting customer after customer, while also ringing in the grocery items correctly, while also feeling overwhelmed by the florescent lighting and the constant electrical sounds. I apply and then ask my daughter (middle child)about it, as she just this week worked her last day at the same grocery chain.
“Yeah, I think that’s what replenishment clerk means. I don’t think you’ll want to work at the cash. I mean, you’re like me.”
“Like me” means really sensitive to busy environments and prone to anxiety when faced with the double whammy of dealing with lots of sensory stimulation and prolonged public interaction. I laughed a little yesterday when she chose to eat in the car rather than eat in a restaurant, saying she felt weird eating in public places. Then I remembered being seventeen and feeling weird and eating in a public place anyway, wondering if anyone knew my heart was pounding knowing I would have to order a meal soon. In our medical records, “like me” involves a list of diagnoses including ADHD, atypical depression and social anxiety. These labels may be revisited one day. I know a lot about that over my oldest child. The first kid where my husband and I first said “like me”.
Our oldest son, now at the beginning of his university career, started with a diagnoses of ADHD, anxiety, OCD, dysgraphia, and ticks within the “Tourette’s spectrum” (which I guess is a way of saying not quite Tourette’s syndrome, but sort of). Then at the age of 11, this got changed to ADHD and autism spectrum disorder, Asperger’s type. I remember how the professionals doing the diagnostic testing asked about family history of learning disabilities and mental health issues. When I said I had been diagnosed with non-verbal learning disability as a child, and OCD as a teenager, one of them looked at me with absolute seriousness and said, “Oh, that’s an old term, non-verbal learning disability. Most of the time it’s just high functioning autism.” From there on, anytime we were asked about some sort of behavior that was considered abnormal and that we didn’t think twice about, there was this knowing nod and a “You were like that, but maybe not as bad?” The funniest incident of this type happened when he saw an occupational therapist working with him on sensory sensitivity. He kept on telling her how “Mom has more trouble with that than I do.” Eventually he came home with a book of exercises for dealing with sensory issues in adults. But hey, I am now able to be in a Walmart without needing to run to the bathroom to vomit mid-trip due to sensory over-stimulation.
The youngest child didn’t get out of being “like us”, either. ADHD like everyone in the family, and OCD just like his mom. You would think that the professionals who work with our kids would respect that two grown adults, neither neurotypical and both with mental health struggles, but who have crafted a successful academic, professional and social life for themselves, would be especially adept at understanding the needs of children with similar struggles. Unfortunately, that’s not how it often goes. Instead, us parents just “don’t get” that the things we advocate for are just not “how things are done” . This is really frustrating when the things we ask for are often better for all kids, just not our own. For example, our kids have all experienced being in classrooms where the teacher manages the class with ease and the students are quiet and respectful. Our children were able to concentrate, listen and perform their work well in these classrooms (even without medication) — as were the other children. Other times, they have worked in a classroom with the same other students but a classroom teacher with less ability to manage student behaviors. In some of these classes, students were not only chattering constantly, but were also verbally bullying and tossing things around. Our kids, along with others experiencing learning difficulties or ADHD, were the most impacted. The message we often got from the teachers of such misbehaving classrooms was that the other kids were being “normal”, and our children needed to learn better coping strategies, or go work independently in the learning center. Somehow, I doubt this kind of classroom atmosphere is good for any of the students.
When I explain our parenting struggles to others, most people are empathetic. But sometimes I get a commentary intimating that two people, each with ADHD, learning disabilities, and mental health issues, should not expect things to be okay if they choose to have children together. I understand the view point. Two years ago, I repeatedly accompanied a hospitalized daughter experiencing severe difficulties with anxiety and depression. My husband has panic disorder and severe anxiety; I have depression. We both felt bad for her at the time that she was “like us”. As we learn more about the heredity of mental health conditions, more parents will consider their “responsibility” regarding whether they should consider having children if they themselves aren’t neurotypical or have a mental illness. And as genetic screening expands to screen for mental health conditions, more parents may have the ability to choose whether a child who is not neurotypical is born.
I think that as we develop our technological capabilities and scientific knowledge regarding genetics, we need to look at the potential social impacts at the same time. Most specifically, we need to look at what is “typical”, what makes a disability (or an ability for that matter), and what types of people we need to make society function well as a whole. We need to consider some of the joys and special abilities of the non-neurotypical brain alongside looking at the struggles and costs of living with one.
Disabilities are contextual. By definition, a disability is “a physical or mental condition that limits a person’s movements, senses, or activities”. These limitations are in context to the activities that are expected to be performed within a person’s culture, as well as the technological and social supports the person has. So, while someone who is blind has a sensory-based disability, they would not be affected by their disability while listening to music. In fact, there are many examples of visually impaired, but musically talented people. A paraplegic with a state-of-the-art electric wheelchair is functionally less disabled than a paraplegic in a third world country using a second-hand push chair discarded by a charity hospital.
Context of disability becomes even more complicated when we look at neurological differences and mental illness. Jane Healy, and educational psychologist and the author of “Endangered Minds”, described a unique hypothetical situation. Suppose that the education system was developed to promote the strengths of most dyslexic people. Suddenly, we would have students being labeled as musically or artistically disabled! Let’s broaden this thought experiment. Maybe we have a society that values the strengths typical of those with ADHD. People would be diagnosed with “Risk Aversion Disorder” and “Divergent Intelligence Disorder”; having difficulty keeping up with the masters of brain storming and opportunity finding among their ADHD-diagnosed peers. If we valued the strengths of those with Asperger’s disorder we would have people diagnosed with “Hyperfocus Deficit Disorder” and “Inadequate Attention to Detail”. Even clinical depression, a condition well known for its’ negative effects on cognition, can have its’ advantages. In “The Confidence Game: Why We Fall for It…Every Time”, by Maria Konnikova, the author explores how our ego protects us from consciously knowing we were wrong in our estimation of someone…except in the case of people dealing with clinical depression, who are harder to dupe due to having low self esteem and therefore not overestimating their ability to judge others.
I also think there is value in the diversity that different types of minds bring to the world. Being on the outside offers one a different perspective on society and culture. We were once told not to expect our oldest child to be capable of college, or even to expect him to be likely to make friends. He surpassed these expectations by far, and is now attending first year university on scholarship, studying policy and governance. He also has a few close friends; he even had a significant other for awhile, another thing we were told not to hope for. I think he is a good student, worker, and friend not just despite having Asperger’s but in some ways because he has Asperger’s. He views society somewhat from the outside in a rather objective way. He doesn’t take it for granted that “that’s how things are done”, because many of our social rules don’t make inherent sense to him. This helps him be tolerant of a broader range of social norms, which in turn helps him with his friendships (even if they are of lesser number) and with understanding socio-political structures.
Many of the reasons I fell for my husband are connected to neither of us being “normal”. I loved his quirky sense of humor, even if it was often a little off topic. I loved (and still love) how we can bounce ideas off each other all day, or pick up and leave on a random adventure on a whim. That is also part of having ADHD, along with the difficulties listening and sitting still.
Some of the things I love most about my kids are also tied into their mental health challenges. As I said above, I really like how my oldest son is able to not take social norms for granted as being what’s right. I like how my daughter’s social anxiety catalyzes her to be more thoughtful of the needs and feelings of others; as she wouldn’t want others to endure the same difficulties as she’s had. I enjoy how my youngest son can drift off into a world of his own imagining and ends up 200 pages in to his latest try at a fantasy novel…if only he could get the setting quite right…but he will one day! I think he wouldn’t have found these worlds if he was always “paying attention” like the other kids. I am both sad, and happy for, the fact that my children have struggled with anxiety and depression as my husband and I have. This is because I both wish they didn’t have to suffer, but am also proud of their ability to empathize with the suffering of others. I’m not sure it would be as easy for them otherwise.
So kids, you are somewhat “like us”. And that can be hard, but it’s also okay.