A view of autism from along the spectrum

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

MJ is always happy when he is making something. It can be building a Lego, baking cookies, or a number of other activities. A week or so ago he told me he wanted to make a video. The subject was his often performed rendition of the Christmas song Dominick the Donkey performed by a pair of nutcrackers. It was his video, so all I did was film it, letting the setup to him. I still laugh every time I see it.

Wade’s recent post on the Combating Autism Act got me paying more attention to this often discussed (except in House of Representatives) piece of legislation. After ranting a bit in the comments to Wade’s post (Sorry Wade, I’ll keep future rants on my own blog!), I paid a little more attention to what has been going on.

I was pleasantly surprised at the amount of information that was so readily available. I was able to see Rick Santorum and Joe Barton on CNN via YouTube. I heard an interesting interview on my iPod. Heck, even the House and Senate have a wealth of information on-line. I was unpleasantly not surprised at the state of politics I found therein.

Growing disillusioned while conducting my research, I thought back to a time when politics wasn’t so petty and ego driven. To a time when people in Washington cared about doing what was right. To a time when people not only did the right thing, but also engaged in witty banter while walking down hallways. Yes, I thought back to a time when Aaron Sorkin was writing weekly episodes of The West Wing. To a time when 44 minutes of drama was enough to resolve political gridlock (88 minutes over two weeks for a particularly difficult issue). My thoughts eventually took me to this question: What Would Aaron Sorkin Do?

Now I’m no Aaron Sorkin, but I can’t help but think of a few scenarios that he might use to address the current situation. Since he’s a little busy with another writing gig, I’ll pass them on without his review.

• In a last minute attempt to save face, Rep. Joe Barton holds a press conference. He states that he sent an email last week to his entire committee indicating that he is willing to release the Combating Autism Act for a vote but no one replied. Senator Ted Stevens joins Barton at the press conference and goes on to explain that the email was never delivered because the internet tubes are clogged. The committee agrees to release the bill to vote as long as Senator Stevens agrees stop referring to the internet as a “series of tubes“.
• Sorkin updates the story from The West Wing season 2, episode 17, in which an elderly Senator filibusters in order to get a bill passed with money for autism research. In the West Wing version, Senator Stackhouse from Minnesota reads recipes for 8 hours, preventing the Senate from adjourning for a weekend recess. As the filibuster eats into the weekend, the White House staff realizes that the Senator has an autistic granddaughter and rounds up support for adding the autism research money to the bill. Sorkin would make some adaptations as House rules preclude a filibuster. Changing the storyline to keep Barton from going home for Christmas would be interesting.
• In a third possible scenario, Representative Duncan Hunter, Chairman of House Armed Services Committee, submits a bill to the house floor for a vote. The bill allocates $1 to fund upgrades to the US military base in Qumar. Before the vote, a Fellow Californian, and Chairman of Appropriations Committee, attaches an amendment consisting of the entire Combating Autism Act.
• House Republican leaders show up in Barton’s office and tell him to let the bill go or lose their votes for any leadership position for the next session. Again leveraging the script he penned for The Stackhouse Filibuster, Sorkin has President Bush, within earshot of reporters, saying of Rep. Barton “He’s a curmudgeon. A grouchy old crank,” The House leaders and President Bush also force Barton participate in the annual Big Block of Cheese Day. He is assigned to sit down with Mike Bernoski and actually listen to what he has to say.
• In my last scenario, Barton realizes how out of touch he is and releases the Combating Autism bill. In a press conference he says “If 244 Representatives cosponsored the Combating Autism Act and only 14 cosponsored my NIH Reform Bill, maybe something is wrong with the bill or my politics.” Nah, that one is too idealistic for even Sorkin.

I can barely believe what I read tonight from my fellow bloggers.

My heart breaks. Again.