My Haunted House

I hear footsteps, crashes, doors opening and closing, voices, and strange noises on a regular basis. I am often jolted from my sleep in a panic. I am unable to locate objects or find that they have been moved. I often find things inexplicably broken.

Yes, my house is haunted – It has been for years.

In the movies, we often find ourselves wondering why the families do not move out of their haunted houses. Why do they subject themselves to the stress and anxiety of living with ghosts? Who would want to live in fear, waiting for the next haunting to occur, always on edge and unable to fully relax in their own homes? Why do they stay?

For me, the answer is simple. Moving would be pointless, there is no eluding the ghosts. They haunt me wherever I am. Even in solitude, there is no reprieve, for I know the phone can ring at any moment. A single call can rip me from a seemly normal routine and turn my day upside down.

Several years ago, I used that analogy to describe to a friend what it is like living with autism. I have never been able to come up with a more accurate description of my home life. I live with a heightened sense of awareness, constantly monitoring my environment for unexplained or unwanted noises and even silence. For I know from experience that any of those things could mean disaster. The unexpected is expected – it is only a matter of time.

Among other thing, over the years, those unexpected sounds have included broken lamps, a TV being pulled off of the stand, leather furniture being punctured with a candlestick, broken glass on a fireplace, the pool cleaning brush breaking out the screens of the pool enclosure, a stuffed animal being sucked into the pool pump system, and a $12,000 flood.

If you are the parent of a child with autism, you know exactly what I am writing about. Being jolted from our ‘normal lives’ is our normal life. We are constantly on edge and alert. Even sleep, when we get it, brings little relief. Being jolted in the middle of the night is a common occurrence.

It is not surprising to learn that many parents suffer from depression, anxiety attacks, and even posttraumatic stress disorder (PTSD). We never fully ‘turn off’ from our commitment and responsibilities. We are on call 24 hours a day, 7 days a week, 365 days a year and it never ends.

While I am ‘haunted’ ‘less frequently now that Mike is older, I am no longer ‘living with the ghosts.’ Simply put, we cohabitate. I am unaffected and unfazed by situations that would cause most people to run for the door. For me, accepting cohabitation was the only way I could gain control and achieve happiness. It was a choice to let go of being irritated by the accommodations one must make to live in a haunted house. By making that choice, I have been able to find my happiness within his happiness, even when it inconveniences and/or annoys me.

I have accepted that my house will always be haunted. I have been able to exercise the most annoying ghosts and even enjoy some of them. Thankfully, for now, the ghosts have not been as startling but who knows what tomorrow might bring? See that is the thing about living in a haunted house – you never know what will jump out to get you next.

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My Favorite Ghostbuster

Another Milestone Lost

It’s that time of year again – prom season. It’s the time of year when I avoid my Facebook Newsfeed like the plague. The pictures of my friend’s teenagers eat away at me. I look at my friend’s son who was born around the same time as Mike and feel the giant gap between our boys. This year, the pain is compounded by the reality that Mike is a senior. He should be preparing for graduation, packing for college, and attending the prom like the rest of his classmates. He is not.

If you follow my blog, you know how deeply I love, accept, and celebrate Mike. I’ve rejoiced with every milestone; knowing how much effort basic tasks are for him to master. I do my best to approach each day with acceptance. I have mastered the art of burying my pain and remembering that each day is a gift. This year, I’ve been having a difficult time pushing away the painful realities. I’ve received college brochures, been solicited for graduation announcements, and even received a call from a military recruiter. There have been countless little ‘hits’ that I’ve had to push out of my mind and heart. At the beginning of the year, I was provided a graduation packet that included a form to order Mike’s cap & gown. I glanced at it and stuck it in a pile of papers on my desk. I haven’t been able to open the packet since, and the deadlines have past.

While I’m proud of Mike’s accomplishments, I’m also feeling melancholy. He is graduating, but returning to the same school for four more years. He will be there after his younger sister matriculates to college. He will be there until he is twenty-two years old.

After painful consideration, I’ve decided to skip Mike’s high school graduation ceremony. While I have no doubt that his school and teachers would provide whatever accommodations necessary to ensure that his participation would be without incident, I’m just not sure that there is anything that could accommodate ME.

I know that I won’t be able to sit in an audience and watch his typical peers transition to life without feeling immense sadness. I don’t want to listen to speeches about opportunities and the future. I don’t want to see Mike sitting in the crowd of students with headphones on and playing on his iPad. I don’t want to spend his Graduation day mourning for his reality.

I’ve decided to celebrate Mike’s accomplishments in a manner that he will enjoy. I’ve decided to have a private party with his friends and family. I’ve decided to avoid the traditional and opt for the personal. In all honesty, a private party is probably the greatest graduation present I could give him. It’s an accommodation that will let him be ‘Mike’.

 

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