Tuesday, November 11, 2008

Yes, I'm still here, part II

I think those of us on the spectrum are always living close to our outer margins. We use so much of our available resources coping with the sensory barrage and the emotional confusion of the typical outside world, that there is not all that much left.

Add illness, stress, or time pressure to that mix, and things fall apart.

Last spring, I ran, full-tilt, into the metaphorical wall.

My younger son was falling apart and the school was playing its typical delay game. (Fiddling while Rome burns, anyone?) My father went into acute kidney failure and almost died. He is now only alive because of dialysis 3 days a week. My mother needed urgent spinal surgery and has not fully recovered, either mentally or physically in the past 4 months. Add to that, the fact that they live a 3 hour plane ride from me and I am their health care proxy.

By late summer, I was a wreck.

I made the difficult decision to stop working for a while, an extended sabbatical. I have been working in my profession for 22 years, in this practice for over 10. It is a job I have always loved and one that is emotionally fulfilling, as well as emotionally draining. But I realized that I had hit a point where I was taking care of other people in every facet of my life. And not taking care of myself.

Two months later, I am starting to feel better. I still have to fly down to where my parents live and help them make difficult decisions about their safety and their living situation. But my younger son is *finally* on an appropriate IEP, getting the appropriate help in school and for the first time since last year, I am seeing his face light up in smiles.

I know how blessed I am. If it were not for my incredible, patient, supportive, loving husband, I wouldn't be here.

Friday, July 11, 2008


My 12 year old son can charm the rattles off a rattlesnake when he wants to. Other times, he retreats into himself, avoiding confrontation like the plague.

He can't remember where he left his backpack/towel/glasses/shoes/book/etc.

He gets easily frustrated at the first roadblock of any task.

He still has difficulty tying his own shoes.

. . .

And yet he very calmly and competently flew on his own from Boston to Portland, Oregon yesterday, easily navigating the transfer/change of planes in San Francisco.

According to my dear friend who picked him up at the Portland airport, my son was 'holding court' with a group of the flight attendants as they all walked off the plane together. Now, he *didn't* fly as an unaccompanied minor and the attendants had no responsibility to take care of him. They just gravitated toward him. He must have been in full charm mode.

For the next 3 weeks, he will be with his best friend's family touring the pacific north west in their RV.

Not too shabby for the kid who was nearly destroyed by 6th grade.

Friday, May 30, 2008

I'm still here. . .

It's been a difficult year. Since the fall, I've been dealing with one thing after another, and it's taken its toll, particularly in my participation in this blog and the greater internet sphere of the Autism Spectrum.

In September, I broke a bone in my foot and spent most of the fall on crutches.

My younger son 'crashed and burned' in 6th grade and I've been advocating for him since October, watching his anxiety spike and his self confidence erode.

Early in 2008, I had some abnormal test findings on a routine mamogram.

In the Spring, I got involved in an advocacy project to fight for the middle school's newspaper. Little did I know it would involve nearly every waking hour and meeting with city, school officials, and parents, putting me in 'center stage', when I prefer being behind the scenes.

Last month, my father had orthopedic surgery, was sent to rehab, went into acute kidney failure and nearly died. As his health care proxy and the only member of the family with knowledge of the health care system, it falls to me to coordinate his care and advocate for him.

In the process of dealing with his medical needs, it became clear to me that my mother's cognitive status is slipping. And she also needs urgent surgery.

So, my resources have been taxed to their utmost, with nothing left to offer to this blog or to the autism community. For that, I feel badly. At least many of the issues that became issues this past year are now resolved.

My foot healed.

The paper was saved.

My son has an appropriate IEP (though it took from October, when I raised these issues with the school to May until we had his IEP meeting) so 7th grade won't be the wasted year that 6th grade was.

It is highly likely that my own health issues are resolved as well.

What is still highly distressing is my parents' health. My father is on dialysis, which he is not tolerating well. He's been in and out of the hospital 3 times in the past month, is there right now again. My mother's anxiety and depression are decreasing her cognition. She is also experiencing leg weakness from a back problem and is a falls risk, but refuses to use a walker or a cane. They live a 3 hour plane ride away, and advocating for them largely falls on me to accomplish via telephone. I've already flown out there for a week, returning home thinking they were stable, only to find out they are not.

I have appreciated the comments of support and the emails I have received from commenters. Thank you all very much.

I am hoping for a boring summer and a time when I can recharge my depleted emotional batteries and be able to be a better blogger and aspie-advocate.