Monday, January 17, 2011

Life Story

When I meet people, I am always uncertain how much of our story they need to know. Sometimes I tell people that David has autism and sometimes I do not, depending upon the situation. I guess sometimes I do not need to worry about making that decision because they figure it out on their own, anyway.

David has been taking great delight in turning Andrew's video game off in the middle of the game. Initially, I really think he liked the sound that that the Xbox makes when it is powering off. But, we have "reinforced his behavior" which is autism-speak for made the situation exponentially worse, by how we have reacted when he does it.

Understandably, Andrew gets pretty upset, especially about the sixth, seventh or eighth time that it happens, but I think the kicker for David is when his middle-aged mother, sporting a recently acquired and as of yet undiagnosed hip problem comes charging, okay limping after him. We have turned it into a game and in David's opinion it is hysterically fun.

Plus, David has a memory like an elephant. I can block access to the door, but David will wait—sometimes hours--until the phone rings, or it is time and cook dinner, or I have to go to the bathroom and seize the opportunity to sprint toward the door, glancing over his shoulder to make sure I am trailing after him, dragging my right leg behind me like the villain in a B-movie who is detected only because of the strange shuffle footprints in the snow. Occasionally, I can catch David. Most times I do not—because he has gotten too much of a head start--yeah, that's it.

So, last week I had a locksmith to our house to ask about securing the pocket door that separates the basement stairs from our family room. I thought I had explained quite clearly what I needed, but the locksmith apparently thought I was confused. He really did not believe that I wanted to be able to secure the door from the basement side, to block people (aka David) from being able to go downstairs. He finally asked me, "So what EXACTLY are we trying to do here?" It was as if he thought I wanted to be able to hide in the basement and protect myself from the alien invasion, or even to win at hide-and-go-seek every single time.

I made my full confession and told him that for the sake of family harmony, not to mention maternal sanity, our oldest son needs to be able to block our youngest son from having access to the basement after he has committed some unpardonable sin which may include but not be limited to dumping all of the toys onto the floor, or turning off a game in play, or just being a general nuisance when friends are over because, you see, David has autism.

I saw the all too familiar "too much information" look flash over his face, but I must have made my point because he informed me that he would order the "privacy latch" and call me when it was in.

I guess the next time I feel like keeping my personal business, well, personal, I need to craft a plausible excuse in advance—preferably one that doesn't involve autism or aliens.


  1. dear Kathy, Sympathy on the hip. Couple things: 1. don't cross your legs under any circumstance. Believe me I know how hard that is. But it is terrible for the hips. I worked with Miss Porter RN at Mt. Sinai who used to slap patients' feet if they crossed their legs in bed. Nice. But they got the message, and so did I. 2. Try sleeping with a pillow between your knees when on your side to keep the hips in alignment. 3. Try the weights at the gym (if you have them at home or go...hah) I found tremendouse relief from doing the machines at the Y in Ipswich, simply strengthening the muscles around the arthritic joint. 4. Cortisone injections. My worst time was when newly pregnant with Andrew when the hormones being all riled up with pregnancy flared the hip nerves as the pelvis widened. I was non-weightbearing at one point and it wasn't pretty. I had two I think from my Minnesota Viking orthopaedist (LOVED him) and with relief came this healthy but enormous boy. Steroids or ice cream...we'll ever know.

    You will also be amused to know that David recently put on a knob with a lock to our basement door to keep Edward out as well! Ours is a standard door, so all he did was switch the knobs to one that locks with a key from upstairs and a button downstairs. If the privacy latch doesn't work, you might just try putting in a standard door. But believe me, we're right there with you.

    Be at peace, and out of pain, with love xoxox

  2. It used to worry me that people might see the small bolt on the outside of the Other One's bedroom door and think we used it to lock him in, when actually we used it to keep BB out when the Other One wasn't there to defend his property!

  3. I go through this, too; especially since there's so much more to our lives than Autism and I want to be sure that's known as well.

  4. Oh, Kathy. You kill me! First of all, you are NOT middle-aged. Helen has good suggestions, I hope one of them works for you, although I especially liked the B-movie reference - a great visual! You do such a good job of balancing. I think the way you often use your current "issue" with David as an educational tool for someone unaware of the complicated life you lead is just terrific. You give just enough info to allow for some understanding and maybe a little empathy. Keep writing!