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

GOOD NEWS FROM THE FUTURE: Blog Addition

I am actually forcing myself to write this blog posting because of the emotion it is going to stir in me. I doubt I will get through it without tears. Now, before you stop reading, I should tell you that they are tears of happiness.

A couple of days ago, Mike started Special Olympics bowling. I am fortunate that Mike attends an amazing school with teachers that are beyond dedicated. In short, they are not just teachers – they are family. While none of them have disabled children of their own, they go beyond the scope of the classroom. They volunteer to coach their student’s Special Olympics teams. Their dedication ensures that the students can participate. They provide an added layer of comfort for their students and parents. We do not have to worry about a ‘learning curve’ with a new coach.

As most of you know, Mike ate chicken nuggets for the first time in 14 years at this bowling practice. While I am shocked and thrilled at this progress, it was not the highlight of the day for me. That came from watching my son and quietly acknowledging the progress he has made.

As I sat back and observed him, I reflected on the years of pain I had while watching Mike participate in activities. He required constant prompting and always seeming disconnected from the group. Since he would wander away and his behavior was unpredictable, I always had to hover over him. It was work and, to be honest, not much fun for me. For the love of my son, I pressed on – and on this day, I reaped the benefits of my hard work.

As I watched him, I realized that he has changed. He is not disconnected or isolated anymore – he fits in with his peer group. To be honest, he is actually quite popular. His friends get him and play along. They laugh when he is goofy – they script with him – and they tell him to “SHUT UP” when he is annoying. It is all so very normal – and yet so very magical. (Here come my tears)

When Mike and I arrived at the bowling alley, he bolted through the door and headed straight to his FRIENDS. We have never been to this bowling alley, so I quickly followed him, in case he decided to disrupt other bowlers. My anxiety subsided as I saw him approach his friends. He smiled when he saw them. He greeted them by name. When a classmate avoided his greeting, he bent down to her eyelevel and forced a “hello Mike” from her.

He took off his shoes, put on socks and bowling shoes, only needing my assistance to tie the laces. He grabbed a few balls and placed them in the rack. He waited his turn and watched his teacher enter his name on the scoreboard. He moved around the group of approximately 20 kids and interacted with them. When the bowling started, he followed the game and knew what to do. He cheered and high-fived his friends when they bowled a strike. He looked for praise from others when he bowled a spare. At one point, he ordered food from the snack bar – calling me over to pay, of course.

Directly behind where the kids were bowling, was a sport’s bar area. I sat in there with Mike while he ate and remained there for the bulk of the practice. I was able to watch him, in case he needed me. I was able to sit, relax, and enjoy my son’s bowling practice.

The wonderful part – he did not need me!

 

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Trick-or-Treat Party

I never worry about Mike being left out of parties –

I am always too busy hosting our OWN, BETTER PARTY!!

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For the past five years, I have hosted a Trick-or-Treat party for

our school’s Raider Buddies group. Our group averages approximately

50 ESE & typical students, teachers,

parents, and friends.

 

To ensure a successful and EASY party, I have streamlined the organizations.

Here are some of MY helpful party tips:

 * Send invitations EARLY and OFTEN, especially if you are dealing with high school kids- typically the first week in October (I’ve included a copy of MY flyer) …

* DO NOT LEAVE ANYONE OUT!!  If you have students living in group homes, as we do – arrange transportation/carpools EARLY. Oftentimes, proof of insurance is required to transport students that live in group homes. (It is very simple – just don’t wait until the last minute.) I actually invite the entire group home to participate. Last year, we had a developmentally delayed 39 year-old woman who Trick-or-Treated for the first time in her life.  She talked about it for MONTHS!

* Seek donations for Trick-or Treat bags – some kids will show up without them.  My grocery store hosts a Halloween event and is HAPPY to supply our group with bags.

*  Make sure EVERYONE has a costume. I typically keep some face paint on hand, just in case.

*  Have water bottles and stick one in every student’s bag.  We are fortunate to have a golf cart follow our group.  It carries extra water and assists when students (AKA Mike) get tired.

*  Have a CLEAR pick-up time on your invite.

* BE ORGANIZED:  I typically do not allow the students INSIDE my home for this event. If I do, they will make a mess and I will never get them motivated to leave on schedule.  I organize the bags, water bottles and candy, on tables, in my driveway.

* To ensure that my neighbors are prepared for a group of 50 or more teenagers, I send a flyer to ALL of my neighbors, notifying them of our group (I’ve included MY flyer).

*  Have an adult or typical student LEAD the group.  We pair our kids up with their buddies, but assign a LEADER to notify the homeowner that our group in there.

*  Snap a group picture and SEND A THANK YOU CARD TO YOUR NEIGHBORS! They will LOVE this and feel good about supporting our kids!

*  Invite your principal.  He/she probably will not come, but make them aware of the event. I am hoping to get some press coverage this year. 🙂

*  Bring flashlights

 

 

MY NEIGHBORS LOVE OUR GROUP!! Last year, I had a neighbor drop off candy and treats for our kids, prior to Halloween because she was not going to be home.  I also had a neighbor write a letter to our school board members bragging about our students.   

 

Raider Buddies

Trick-or-Treat Party

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 You’re Invited to Trick-or-Treat

with Your Buddy!

At Mike’s House

XXXXXX

XXXXXX

XXXXXX

 

Halloween Night

6:30 – 8:30

Please come in your costume!  Bring a flashlight, candy bag, and

eat dinner prior to arriving.  We will be leaving promptly at

6:30 to Trick-or-Treat

If you need a ride or a costume,

contact Ms. XXXX

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Dear Neighbor,

My son, Michael has autism and is a special education student at XXX high school. I have invited the Raider Buddies club to Trick-or-Treat our neighborhood on Halloween night.

Raider Buddies is a school-sponsored club that encourages friendships between general and special education students.

Please be advised that some of the ‘special students’ in our group have challenges with language and personal space.  Some of our students can be fearful of scary costumes.  We will assign a leader to notify you when our group is approaching. I would appreciate your cooperation in not attempting to jump out to scare the students. While they are high school students, developmentally most are significantly younger. Also, one of our students is blind and navigating an unknown location can be challenging for him.  In addition, taking just ONE piece of candy can be a difficult concept for some of our kids.  If possible, I would prefer that you hand the students the candy, rather than allowing them to grab a handful.

I’m anticipating a group of approximately fifty (50) special and general education students, faculty, and parents.  I recognize that this is a large group, if you have an financial concerns about providing the extra candy, please call me and I will deliver you candy to provide to our group.

They are a wonderful group of kids – I promise they will not Trick, as long as you give them some Treats!

Thank you & Happy Halloween,

 

Autism Hippie

 

As you can see, I have done ALL the work for YOU!!  I hope

I have motivated you to get involved and plan your own

Trick-or-Treating party! 

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