Parenting without a Handbook

There is no handbook to parenting a child with a disability. “Buck up,” you’re told, “it will all be okay.” Really?

Even if it becomes okay, even if it becomes routine, figuring out how to navigate the unfamiliar is never easy, something that Andrew Solomon identifies quite poignantly in his 2012 book, Far From the Tree: Parents, Children and the Search for Identity. You are, after all, most likely different than that person, regardless of their challenge, whom you are raising.

Not just a little bit different. You may be genetically different, developmentally different, and/or physically different. Your frame of reference is different, along with your life experiences based on the fact that you most likely fit into more standard identifiable norms.

How can you truly enter your child’s head – feel what they feel, experience their frustrations, their happinesses, and their lives – if your entire frame of reference is different? How can you feel secure that your parenting – good and bad – answers that child’s specific needs?

Solomon’s book, and it truly is a must read for all human beings, runs the gamut of the parenting experience, with chapters about Autism, Deafness, and Down syndrome, in addition to Dwarfism, Schizophrenia, Rape, Crime, and Transgender.

Just that partial list says so much about recognizing the myriad challenges of parenthood. The outcomes that we can’t predict. We want to know exactly what we’re going to get, and indeed go to great lengths to best insure we’ll get the ‘right’ package at birth, but there’s so much we don’t know, can’t know and will never fully understand.

As Solomon discusses in his excellent Ted Talk, you learn resiliency as well as lessons of unconditional love that sound cheesy but aren’t.

Our parenting experience when it comes to disability and difference has been one of understanding. Literally. Akiva, who is now 17, and has Down syndrome and PDD-NOS, on the Autism spectrum, is not a person with a significant amount of spoken language. Getting him to respond with words, as well as figuring out what’s on his mind, what’s bothering or making him happy, and including him in the rest of the family conversation is a constant effort.

Just the other day, he arrived at Shutaf’s afterschool program with two nasty scratches. Thanks to the joys of my smartphone, I was able to look at pictures, be in touch with school in order to figure out where it happened, and discuss a follow up plan of action. Even more importantly, Shutaf staffer, Yoni, was able to talk through the matter with Akiva, who needed assistance discussing what had happened, why his neck hurt, and how to avoid such problems (a big issue for Akiva who likes to reach out and touch people who don’t want to be touched) in the future.

When he’s sick, it’s another story completely. His conversational skills (he has plenty of receptive language) retreat entirely, leaving him with little more than grunts and moans depending on how he’s feeling. We’ve worked at basic stuff, “does your belly hurt?” or “how’s your head?,” but he mostly parrots us, as opposed to truly giving information. We watch him carefully, noting how much he drinks or eats, how moves his body or head in order to indicate what’s bothering him, and we’re experts at dealing with stomach upsets of all sorts, his specialty. My husband and eldest son have been known to jump out of bed to his bedside, vomit bucket in hand, in less than 20 seconds, upon hearing a certain pre-barf cough of his.

This past June, it was alarming to note how little the medical establishment trusted our intuition when faced with a seemingly non-compliant patient with limited expressive language. After misreading what was going on, ignoring our interpretative skills and his clear distress, Akiva spent a few days in the hospital with pneumonia, and we changed pediatricians, finding someone who understood that she needed to listen to our calls for help as well as learn how to read him when he’s ill.

Wouldn’t it be great, I wondered, if all doctors-in-training read Andrew Solomon’s book, spoke to parents who represent the range of experiences reflected in that book, and considered our multi-faceted role as parents, especially when there’s an unusual challenge faced. One for which we had no previous preparation or training.

What fantastic humanistic skills for all of us to acquire. To learn how to ‘read between the lines’ with a person, to consider a differently-ordered-thought-process with skill and refinement, to grasp at words he can’t say, thoughts he can’t express, sadnesses he can’t always share, joys he can’t always shout out. To know you’re estimating but to do it with heart and caring.

Only then will you know, like us, to hope you’re being fair. To pray you’re understanding it all. To struggle with the weight of what can’t always be easily defined and help solve it for him, with him. Every day.