A view of autism from along the spectrum

MJ made an amazing comment this past week, but I need to explain the events of the past few months to put it in perspective.

My wife and I have considered the family, in general, and MJ, in particular, to be "in crisis" during the past few months.  There have been many meltdowns, numerous self injurious behaviors, and others have been hurt when they’ve been caught in MJ’s unpredictable explosions.  There was a trip to the emergency room during the worst snowstorm of the winter followed by a hospitalization of 2-3 weeks.  Two weeks later we were back in the ER and found that there were no appropriate hospital beds available.  We went home, continued working with a psychiatrist and psychologist and began working with a wonderful new therapist that has been incredibly helpful.

While the time has been incredibly stressful for my wife and I, I know that it’s been much harder for MJ than it is for us.  He’s the one that went through this traumatic period, not knowing how to react to the stresses around him without hurting himself or others.  No matter what we feel, it’s harder for a 12 year old who doesn’t truly understand what is happening around him and to him and lacks the ability to control either.

MJ’s been through several medication changes since the end of last year and we’ve always been a few steps too late in making a change.  On several occasions, the big meltdown occurred within a day or two of making a medication change, telling us we had moved too late.

We made the last medication change a week before a recent trip to Disney World, with fingers crossed.  MJ had the best week he had in months.  The 10 days we were on vacation were even better.  His first week back in school was better than the week before we left.  Things are not perfect, but we’ve gotten MJ to a better place.

Now for the interesting part.  The therapist working with MJ asked him this past week how he felt and MJ replied that he felt "normal".  The therapist was very surprised to hear him say so and when we all met at the end of the session he told us of his question and MJ’s response.  I asked MJ when was the last time he felt "normal" and he said "a long time ago".  I pushed it a little further and he said that the last time he felt normal was in kindergarten, before he had problems in school and was diagnosed with Aspergers.  I was shocked at his choice of words ("normal") and the time frame he used.  His response showed an incredible amount of insight and the ability to connect to emotions from 6 to 7 years earlier was surprising.

We need to explore, over time, what it means to MJ to feel "normal".  At this point, it seems to mean that the level of stress and anxiety is manageable for him and that he is beginning to be comfortable with who he is.  That is a dramatic change from two months ago and I’m happy for MJ that he feels so much better than he did.  I don’t take this to mean that MJ has changed from abnormal to normal.  It’s simply a reflection of how he felt at that time.  There have been ups and down since then and he experiences periods of stress and anxiety that don’t feel "normal".  But an adolescent, any adolescent, let alone one that’s been "in crisis" for several months, saying they feel normal is a rather remarkable thing. 

There have been many so many changes lately, including medication, increased supports, addition of more structured schedules, and increased incentives for accomplishing tasks difficult for MJ, that it’s impossible to point to a single item as the factor in the change. We’ll continue to try to balance all of these because a sense of "feeling normal" is a wonderful foundation upon which to help MJ grow.  It can be the basis for him to to better understand his differences, and continue the process of developing into a teenager who feels comfortable with who he is. 

Being normal and acting normal are overrated.  Feeling normal is where I want MJ to be.

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.

I’m going off-line briefly while I switch hosting services. All traffic should be directed to the new server in within a day or so.