May 20, 2009 10:35 pm
This is not a post about recovery from autism. If that’s what you’re looking for, move along; there’s nothing to see here.
Recovery is a powerful concept for me. The word itself evokes ideas of struggling against powerful forces such as addiction or cancer. It makes me think of extremes from the relatively simple recovery from a broken bone, to the more life-changing recovery from losing a loved one to death.
The past year has been full of relapses and recovery for me and for my family. We found ourselves in the midst of crises without a clear path out. We faced decisions that I once considered unthinkable. Nonetheless, we have come through intact. I look back at this period with thanks and gratitude yet still surprised at how long recovery can take.
A little over a year ago, MJ hit what would be mildly described as a “rough spot.” It would be more accurately described as a challenge so significant that it put all of his intellectual, emotional, and social development at risk.
It would take a long time to fully describe the issues MJ faced. Professionals used a variety of labels to but I prefer the simple description: “major difficulties with emotional regulation.” While we saw similar issues in the past, the severity and longevity of the challenges were what placed MJ at such a high level of risk.
MJ, somewhat suddenly, appeared to lose most abilities to cope with any emotional stresses. Many of the triggers were things associated, to some degree, with Aspergers Syndrome or other ASDs. He was not able to be at all flexible if things did not go his way. He was hypersensitive to slights (real and perceived) from those around him. Environments with lots of stimulation raised his level of anxiety to extreme levels. However, unlike when he was younger, it was not obvious from his behavior or mannerisms that he was experiencing anxiety. The end result was a frequent loss of self control that led to self harm, harm to others, or some type physical damage.
The outbursts became more frequent and restraint was sometimes necessary to secure MJ’s safety and that of those around him. We decided late last winter that dramatic steps were required and we hospitalized MJ. He had been hospitalized before and the stays were helpful in implementing medication changes. This time, however, we ended up back at the ER within two weeks of his discharge with the same problems. At the ER, staff told us that there were no child or adolescent psych beds available in the entire state. There were a few out of state facilities that would have been a great fit but there were no openings there either. I stayed up that night in the ER, and methodically drafted a list of options. After lengthy discussion with my wife and several doctors, we implemented a medication change and brought MJ home. We also admitted to ourselves that our family was in crisis and began pursuing help from avenues that we had previously avoided.
MJ stabilized for a while and then regressed. We began to consider whether or not we could keep MJ safe living with us. Just considering alternatives was heartbreaking for me. We looked at residential schools and found several that would probably be wonderful places if MJ’s behavior was not a problem. However the safety issues resulting from MJ’s problems with emotional regulation ruled out all the “positive” places and left us with a very short list of options, none of which looked healthy. I became driven to make less dramatic options work.
Things remained rocky and in the summer we decided to hospitalize MJ again. We chose to go to a different hospital this time, making our choice based on recommendations from doctors we trusted. It was the shortest of MJ’s hospitalizations, yet the one with the most significant changes in medication. I don’t like to pursue hospitalization but the one very positive aspect is that the medications can be changed more rapidly than at home because of the level of oversight.
We continued some slight medications changes after MJ returned home and reduced the amount activities in which MJ participated. It became clear that the extra activities were causing anxiety for MJ. We decided that safety was the number one priority for MJ and the other activities, while they had their benefits, put safety at risk.
During this period, I became so focused on MJ that the rest of my life was left out of balance. The stress and worry had a lasting impact although I would take on just as much responsibility, stress, and anxiety tomorrow if MJ needed it.
Since beginning the school year several days after leaving the hospital, MJ has had his best year ever. He’s had no safety issues and has been able to keep his emotions from escalating. He’s been happy, participating, and even building some new friendships. The few rough spots he’s had have been very minor and he easily worked through them with some very helpful and accommodating staff.
At home, things have been better as well. Our token economy focused exclusively on safety for several months. MJ has done so well that we’ve been able to start working other things in again. Most importantly, MJ’s been happier. There’s been more TV and video games, but we’ve set limits and within those limits, MJ is able to have enough control to keep the anxiety level low. A friend of the family that sees MJ weekly recently said that this is the happiest she’s seen him in three years she’s known him. So with all of the challenges he faces, MJ has made remarkable changes. Meds and the environment helped, but he’s put an enormous amount of work into growing and developing self control.
The only aspect of this recovery that surprises me is the feeling I get when MJ experiences some difficulty. The months of emotional struggles and unsafe situations affected me as well as MJ. When he begins to exhibit some emotional struggle, I find myself bracing for a full blown escalation even though it hasn’t happened in 7-8 months. Itâ€™s been difficult to relax and let my guard down.
In the end, the responsibility for recovery is mine. The expectation of â€œrecoveryâ€ is often place on the autistic person. As a parent, I often overlook the responsibility that I have to recover from my own issues. Itâ€™s working through the recovery that gives me back my abilities to be the parents that I aspire to be.