A view of autism from along the spectrum

I’ve written before that parenting, at it’s core, is not much different whether you are parenting a child on the spectrum or a neurotypical child. However, parents, like ogres, have layers and some of the outer layers are very different depending on the type of child you are parenting. Here are three aspects of neurotypical parenting that I don’t miss:

Birthday Parties - kids on the spectrum don’t get invited to as many birthday parties as their peers. I don’t mind because far too many children’s birthday parties turn into incredible exercises in excess. There’s too much sugar, too much parental indulgence, and too many presents. There are exceptions, but no where near enough. Interestingly, while MJ and SJ have been invited to fewer parties, the ones they’ve been invited to have been more low key.

Little League - I had a lot of fun coaching LJ and MJ in little league. To clarify, I had a lot of fun until the players’ parents started getting emotionally invested in how their child performed. That transition for parents begins around age 8, and once a few parents go down this slippery slope, the fun begins to get sucked out it. I once saw a coach climb an 8 foot fence (his players were blocking his way out of the dugout) to run onto the field yelling because an 8 year old player on the other team appealed a play to the umpire. I saw another coach come onto the field and argue a call with an umpire after a close play at home plate. The coach was lucid enough to point out the marks left by the opposing player sliding into home but not lucid enough to recognize that the player was still lying on dirt next to home plate, injured. Having the call go ‘his way’ was more important than the health of the player. There are a lot of parents that make child’s sports a learning opportunity, but there are nowhere near enough of them.

Adolescent and pre-adolescent fashions - A comfortable t-shirt (no tags!) and some sweat pants or other athletic style pants or shorts are about all that’s needed for MJ and SJ. Back to school shopping does not involve any trips to abercrombie or Hollister or long hours at the mall. MJ and SJ are largely oblivious to logos, name brands and other fashion statements. My wife and I actually need to put a little bit of work into the clothes selections so the clothes don’t stand out too much (in a negative way).

If I were the kind of person to give unsolicited advice, I’d offer some to Bob, Suzanne, and Katie Wright. If I were that kind of person, I’d probably post it on the internet and make an attempt to mix witty humor with philosophical insights into the human condition. I’d make sure that most of the advice was appropriate for many people, not just the Wrights. I’d probably organize the advice into a list because lists are so neat and tidy. Of course, I’d have to number the items on the list to give it the impression that some items have more value than others, as designated by a higher or lower number. I’d have to present it as a “Top 10″ list, both because it’s been funny for David Letterman for 25 years and also because all ‘best’ blog posts are Top XX lists (just check digg). I’d title my list Shawn’s Top Ten Pieces of Advice for the Wright Family. But I would only do this if I were the kind of person to offer unsolicited advice.

Shawn’s Top Ten Pieces of Advice for the Wright Family

10. Breathe In, Breathe Out, Move On

9. Remember that the term “Dysfunctional Family” is redundant. For all of us.

8. While I normally welcome events that may slow down the ongoing assimilation of the world by Autism Speaks, family fights are an exception. I’ve seen and experienced family relationships severed, temporarily and permanently, over similar disagreements of principle. The losses are always tragic. Make sure yours are only temporary.

7. Your issues are not much different from any family running a business. The needs of the family and the needs of the business are not always in agreement. When this happens, choose wisely. When you or someone in your family chooses wrong, refer back to item 10.

6. Your 15 minutes are over. Please exit stage right.

5. Money doesn’t buy happiness, and wealthy grandparents can’t always ‘fix’ things. Besides, the most important things to fix are inside ourselves.

4. I’m really glad the New York Times doesn’t consider the disagreements in my family newsworthy. (OK, that one wasn’t advice, but I really meant it.)

3. When it starts to feel like everyone is against you, you are probably your own worst enemy. I’ve been there and done that. Refer back to item 10.

2. The African proverb “It takes a village to raise a child” is dead on. However, don’t stand around waiting for the village to help your child. Instead, participate and help someone else’s child. And fund raising alone doesn’t count as participating in the village.

1. Don’t pay any attention to the advice of bloggers.

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.

This week, Lee took MJ and SJ on a short visit to a friend of a family member. The woman they visited knew that both boys were on the spectrum. During the visit, the SJ asked the woman for a drink of water. While in the kitchen, she asked SJ if she could “Say a prayer over him to help him get well.” SJ promptly replied, “No, thank you” and returned his attention to his drink.

When Lee told me what happened, I laughed at both the well intended, but misguided, efforts of the hostess as well as SJ’s perfect response. SJ demonstrated exactly the kind of self advocacy that I want all of my kids to have. He was direct. He was polite. I don’t know exactly what he was thinking when he heard the request. It’s safe to say that SJ did not stop to ponder the question of whether or not his autism makes him not well. I’m sure his response was not based on the concept of neurodiversity. I expect that his motivation was much more simple. Nonetheless, he was direct, and he was polite. I can think of a better way to start advocating for what he wants.

The boys are on winter break this week and we took a trip to the movies. They love going the movies, even with the loud speakers. At many of the movies, both boys get obviously excited during the action segments. SJ always puts a smile on my face during these times. Over the past few months, I smiled watching him as Lightening McQueen ran the big race in Cars. I smiled as he saw Roddy and Rita fight the waves in Flushed away. During these times, he gets out of his seat, jumps up and down and flaps.

Since we first observed SJ flap his hands at age three or four, we recognized that it’s something he only does when he’s excited. He doesn’t jump and flap when he’s anxious or upset, but just when he’s excited. So when SJ, flaps, I smile with pleasure. I wouldn’t know how to interpret someone else’s flapping and I’m pretty clueless as to how SJ’s flapping appears to others. I do know that when SJ flaps, he’s happy, very happy. And, that is certain to put a smile on my face.

Today we saw Bridge to Terabithia. I was disappointed in the movie. Afterwards, when I asked SJ how it was, he told me that he gave it two and half stars out of five. The most disappointing part to me was that SJ didn’t give it any flaps.

There must be an election in our future. I keep hearing people utter the phrase “I experimented with drugs in my youth”. The only time someone says that is when someone is running for office. We’ve been doing our own experimenting with drugs. Perhaps MJ will run for office one day and he can utter the same phrase.

I am thankful for medications that help MJ and, at the same time, afraid of them. They can work miracles and they can also cause harm. Neither the benefits or risks are ever clear. Hence the need for experimentation.

The need for experimenting with medications is driven by the uniqueness of each individual’s physiology. It’s not possible to accurately predict how every person will react to a particular medication. We can get an idea, but the only way to know for sure is to try the medication. This is even more true for children than adults. Almost all neurological medications are considered “off label” when prescribed for children. The “off label” term alludes to the fact that it is being used for a purpose that is different than that for which it has been tested and approved (by the FDA, here in the US of A). There may be some studies available that involve children but there is rarely the level of research required for FDA approval.

That leaves parents facing some difficult decisions when considering use of such medications for their children. Nonetheless, I believe that medications can be helpful to some children with autism. I’m not advocating medication as a cure or as a one size fits all treatment. Instead, I’m going to share some of the strategies that my wife and I use in making our decisions regarding medication.

Our starting point is to be very specific in identifying what we want to accomplish with medication. It’s inappropriate to introduce medication to do something vague like “help with autism”. It’s a little better to identify a general need such as “help with mood regulation”. I feel much more comfortable when we can be more specific such as ‘help reduce incidents of impulsiveness that lead to safety problems’. I’d love to be even more specific and be able to identify the need as clearly as “help reduce the level of anxiety leads to impulsiveness and that is most apparent in the pre-bedtime hours”.

The next thing we do is research, which of course involves consultation with experienced professionals. I could write lots about this step but there are two items that I find critical for the next steps: 1) how quickly is the medication absorbed and 2) how long it stays in the body.

Regardless of what medication is used and the reasons for using it, I think it’s very important to use the lowest effective dose. This is more important with drugs that have side effects, but it’s a good approach to use for any medication. Of course, the lowest effective dose won’t be listed on the bottle and is likely to change over time based on lots of factors. It may go up and it may go down. The only way to know is to experiment.

It’s exactly this type of experimenting that we’ve been doing the past few months. MJ started at a new school last fall which dramatically reduced the external factors that caused problems for him. Once he settled in we knew that we’d be able to reduce some of the medications that have helped him through a very difficult year. Some of the experimenting was very simple, short, and very successful. We reduced the dosage of one of the medications he was on to almost zero over the course of a few weeks. The medication was fast acting, and it was very simple to monitor the changes.

The second experiment was also somewhat successful but much more difficult. Unfortunately, the only way to find the lowest effective dose is to reduce the dosage until it’s no longer effective. No longer effective. Three words with a potentially huge impact. After all, we’re using the medication for a reason and losing those benefits was very difficult for MJ. In this case, the challenge in finding the lowest effective dosage was due to this particular medication’s very slow absorption and dissipation rate. It was about 10 days after we dropped the dosage the last time when we knew we had reduced it too much. We then increased the dosage, but it took about another week for the level to get back up to where MJ needed it. We were fortunate that this period occurred when MJ was home on Christmas vacation so we were able to make a lot of additional accommodations for him. It was during the middle of this time that I took to writing bad poetry. Fortunately, MJ is doing better, and I’m no longer writing poetry.

It was incredibly difficult to see MJ go through the tough times that I knew I caused. I know it is better for him in the long run as we were able to reduce the dosage of the second medication by one third. It was still hard, for MJ, for me, and for the whole family.

We’ve also learned the hard way to conduct only one experiment at a time. This includes medication changes and other significant changes that may impact MJ. Introducing multiple changes makes it very difficult to identify cause and effect. An unfortunate combination of changes last year resulted in a hospital stay for MJ. We are much more careful with changes because of that incident.

We are always evaluating whether or not medication is effective. Sometimes, we’ll be very diligent about making written records. Other times we’re much less formal. Either way we’re always watching. We’re not always experimenting, but we’re always watching.

I’ll close with the usual disclaimers: I’m not a doctor or a pharmacist. Your mileage may vary.

A meltdown bursts upon the scene
With the fury of a winter gale
The angry wind and driving rain
Awaken tumult from the sea

I must abide this raging storm
That rocks this vessel we call home
I lash myself to the deck
And steer my ship into the wind

I do not fear the ocean’s squalls
This ship has weathered them before
I can outlast the angry wind
It’s time will quickly cease

Suddenly, the sun breaks through
And the wind begins to slow
The storm ends as quickly as it began
A gentle breeze returns

When MJ was an infant, he played the role of baby Jesus in the Christmas pageant at LJ’s school. It was pretty special event.

As I remember this pageant, I think about how important it is for me to always see God in my children. It’s easy to see Him when they are happy, creative, and playful. It’s harder when they are fighting or having a meltdown. I know He’s there and I need to remember to keep looking.

I also need to teach my children to see God in themselves. If I can do that, I’ve taught them something for a lifetime.

Merry Christmas