A view of autism from along the spectrum

Several months ago, Kristina posted a series of questions in a post at Autismland. One of the questions resonated with me and I’ve thought back to it regularly. Her question, and I’m paraphrasing, was “What’s different between parenting a child with autism and a neurotypical child?”

My initial response to this particular question is exactly the same response that I would give today: “It’s not that different.”

Parenting, at it’s core, involves two primary responsibilities. I’ll refer to the first responsibility as providing and second as nurturing and I’ll describe them in more detail below. Effective parenting stems from balancing the two. The process of balancing these responsibilities is the same whether the child is autistic or neurotypical.

The first responsibility, providing, is more complex than it sounds. It encompasses not only providing for physical needs such as food, clothing, and shelter, but also emotional and intellectual needs. It also includes protecting our children from harm in all of the realms. It means keeping them healthy and educating them. It also means protecting them from making big mistakes, sheltering them from dangerous situations, and advocating for them in a variety of situations.

The second responsibility, nurturing, is similarly complex and also covers the physical, emotional, and intellectual realms. Nurturing is how we help our children grow so that, over time, they depend less and less on others to meet their physical, emotional, and intellectual needs. Nurturing means teaching our children to eat, use the toilet, dress themselves, and interact with others. It also means teaching them to make decisions, and to live with the consequences of those decisions. It includes developing their skills to assess risk in new situations and to advocate for themselves in a variety of settings.

Balancing these two responsibilities is complicated no matter what the child’s strengths and weaknesses are. Almost every choice we make as a parent implicitly includes a decision about this balance. We make these decisions dozens of times each day. The decisions varying from the trivial of ’should I let my child win while playing checkers?’ to the more significant of ‘What is the best school setting for my child’.

I’m a parent to both autistic and neurotypical children and can say from experience that the decision making process does not vary from child to child. The variation is in the parameters upon which the decision is made including:

• What are my child’s capabilities in regard to this particular situation?
• What are the possible negative outcomes and what are the risks that go along with these outcomes? Is the impact of a negative outcome a short term one or will it be long term set back?
• What are the possible positive outcomes and how significant is the benefit of these outcomes? Positive outcomes can include both the obvious successes as well as the learning that comes from making mistakes.
• What are the possibilities for me to step back if things go better than expected or intervene if things go worse.
• What are my own capabilities to provide and nurture in this situation?

Because the paramaters vary, the appropriate balance between providing and nurturing will vary from child to child and from one situation to another. But the process is the same and it is the process, not the outcome, that defines parenting.

Since reading Kristina’s question, and continuing to reflect on my response, I find that I now continually make decisions in the context of striking the appropriate balance. I’ve always considered this balance in an indirect way, but it’s become more of a conscious, rather than subconscious, part of my decision making. I consider this balance when SJ walks through a parking lot from the car to a store and does not want to hold my hand. I think of it when I ask MJ to do something that he doesn’t enjoy. It comes to mind when LJ discusses his plans for work and college. I think of it when I decide how to introduce a new activity or responsibility any of the boys. Basically, I think about it all the time.

Despite a healthy pregnancy, our oldest, LJ, came into the world in crisis. There was fetal distress. There was an umbilical cord tightening around his neck. There was a ‘crash’ c-section and a spinal that didn’t take, There was the searing pain of an unanaesthesied abdominal incision. There was screaming. There was a newborn boy with blue skin, a dangerously low heart rate, and no breathing. There was a doctor’s voice calling out an Apgar score of three. There was also a team of professionals that resuscitated LJ and pulled him through those first few dangerous minutes. It was not pretty, but LJ and Lee both recovered beautifully.

Nine years later MJ came into the world following a high risk pregnancy. A pregnancy can be labeled high risk for many reasons, and there were a half dozen factors for which MJ’s qualified. As the day of a scheduled C-section approached, I decided to observe the surgery rather than just standing to the side. I wanted to see MJ emerge into the world in a safe, controlled delivery. However, when it came time, Lee was struck with fear as the memories of LJ’s delivery were too much to put aside. I immediately gave up my viewing position and sat next to Lee, holding her hand and providing comfort. It was where I belonged and where I chose to be.

The delivery went very smoothly and Lee was able to smile rather than scream. The doctors called out some Apgar scores that were high enough for me to know everything was OK. The doctor handed MJ to me to take to Lee. We had a few moments together but I was soon soon directed out of the room with MJ so the pediatrician could begin his checks. I handed MJ to him and found myself an observer again as the wheels in my mind began to spin. Everything looked OK but, perhaps due to months of hearing the term high risk pregnancy, I began wondering if everything was ok. “How do I know MJ is OK? He looks ok, but maybe it’s too early to tell.” At that moment, I realized that there was no way to know if he’s ok or or not. I could know that some things were ok, but I couldn’t know about everything. The realization of that moment is imprinted on my memory forever.

Three years later, Lee’s pregnancy with SJ had a few high risk factors, but there were fewer concerns than with MJ. The level of anxiety was so much lower that, as we drove to the hospital at 6 am for the last of the c-sections, I swung by Dunkin Donuts for coffee. We laughed with the nurses who tried to make me feel guilty for having a coffee as my wife was preparing to give birth. SJ’s delivery went smoothly for all and I carried SJ to the nursery where his oldest brother was waiting. It was a great day.

As I look back, it’s the moment after MJ’s delivery, when I realized that I couldn’t know if everything would be alright, that stands out. It was both liberating and frightening. I recognized that the future held no guarantees and that I better accept it.

Some might think that when MJ and SJ were diagnosed with ASD’s, I got my answer to the question of whether or not they will be OK. Some might think that the answer I got was “no”. Nothing could be further from the truth. Their future may be more clear than the day they were born, but it still cannot be predicted. The answer is not tied to autism.

In the eleven years that have passed since I first asked the question “Will my son be OK?”, I’ve recognized that it wasn’t even the right question to ask. Instead the questions to ask are “Are my kids OK today?” and “Am I doing things to make tomorrow the same or better?”

Yes, and Yes.

My intermittent breaks from blogging have been a very tangible indication of the cycles that my life takes. When I started this blog almost two years ago I would have felt a fair amount of guilt for not sticking with it diligently. Not so any more. I’ve become more willing to accept the cycles. It’s easier to roll with them than to fight them.

I wrote a few posts about some of the difficulties MJ has had over the past several months. While the times have been challenging for me, I know that they are much harder for him. I’ve been working at teaching / coaching / guiding him to navigate his way through the challenges. Some of the solutions require some personal growth for MJ, while others require that we continue to adapt the environment to his needs. Others require careful medication management. All of these require that my wife and I stay on top of our game if we want to make a long term difference.

Parenting has consumed a tremendous amount of emotional energy over the last few months. There’s been very little energy left at the end of the day for either writing or reading blogs. I made a choice to conserve the energy that could be spent talking about autism on-line and instead keep that energy in reserve for parenting. It’s one of the ways that I’ve learned to adapt to the cycles. A wise man named Jimmy once wrote, I’ve had good days and bad days and going half mad days. None of the days last forever but it’s good to have some energy in reserve if needed.

I’ve seen so many changes in MJ over the past few months. While the challenges have been immense, so has his growth. The biggest indication of growth is that he is also learning to roll with some of the cycles. There’s a long way to go, but he is learning. Watching my boys grow is one of the greatest feelings I’ve known.

That’s enough of a rant for now. It’s time to get back to writing. As a wise man named Harry once wrote, All my life’s a circle.