#ISeeYourLight

This afternoon the hubs and I went to Emma’s place at Victory Gardens Biograph in Chicago. An ABLE Ensemble production of Gems Unseen. A.B.L.E stands for Artist Breaking Limits and Expectations. The ABLE group stands alongside the students with disabilities and recites the lines to them so they can in turn recite the line. There is no pressure for the kids to remember their lines and they get to participate in a live onstage productions for their families, friends and community.

Unseen Gems is a production of 4 stories “about 4 very different people and the talents and strengths that lie beneath the surface. Over the course of 10 weeks, the cast of 21 actors with developmental differences, supported by a team of teaching artists and volunteers, devised their own tales for performance. Working in a variety of mediums including, scenes, monologues, movement and music, the group will share their true colors and diverse talents.”

Watching Emma and the actors perform was absolutely amazing. They told stories about people being beautiful on the inside and what that looks like, the outside doesn’t mean anything if the inside is ugly.

For the event I had our babysitter from 11am till 6pm. We all went out to dinner afterwards and talked about the show. I can’t explain how proud I was of Emma, Johnny’s BFF. I was honored to be at that table with Emma’s family and friends.

As I walked into my house at 6pm my son turned around from the table and shouted “asshole!” I guess my presence startled him at that moment. His sitter reported that he was great all day with the exception of one incident with the dog, but everyone is fine.  I talked about the show a little while Johnny started chanting over me and calling my name. I missed him all day but at that moment I could feel my sadness coming in.

After the sitter left I tried to explain to John where we were. Even at John’s
Age of 12 years old, he would never sit still or stop making loud noises at a venue like the Biograph, which is why we couldn’t bring him.

I said, “Someday Johnny I would love if you could come to one of Emma’s shows with us?” John looked at me and said “I can’t wait!” He must have heard that from somewhere as an appropriate response and used it on me. I actually had butterflies thinking that he may want to do something like that someday. Then, he looked at me and said “Chuck E Cheese?” and I said, “Yes, Johnny you are still going to Chuck E Cheese tomorrow, you earned it”.

He needed to make sure I wasn’t upset with him and he still earned it.

I am grateful John can be pleased with so little. He loves Disney, Chuck E Cheese, black popcorn, Wheel of Fortune and taking baths. I could walk through Target for hours without him asking me to buy him a thing. I could drive across the country and he wouldn’t ask for a thing other than the items I just listed.

It’s what he needs to function I cannot give him. The sensory processing, the moments in his head that he can’t control, the anxiety and fear when he meets someone new or goes to a new place. The ability to control his cursing, outburst and frustration. I can’t always give him a quiet place. We have to go out into the world, it’s a requirement to living.

All the things that are important to me mean nothing to him. For example, being able to go to the movies as a family or checking out the latest kid’s venue. Time spent together as a family. I understand that most kids don’t want to hang out with their family but when they grow up they are grateful for those moments and talk about them around the holiday dinners. They reminisce how mom and dad made them do this and that and how they hated it but are so happy they did now. What will we have to talk about in 20 years? How John stayed home while we went to the plays and movies because John just couldn’t handle it? Furthermore, his uncles and aunts aren’t breaking the door down to spend some quality time with him like they do with the rest of the kids. We are all we have to make memories.

Writing this just makes me even more grateful for Special Olympics! Being a part of something big!

His anxiety, cursing and isolation seem to be the norm these days. His obsession with his schedule is getting worse. I am so grateful for his school where he loves to hang out with his 12 other classmates. However, I am already thinking about his transition to high school and how hard that is going to be for him. I feel like I am always ON, never turning off the worry and anxiety of his future.

Regardless of John’s struggles #ISeeYourLight

I see the beauty inside. The boy that makes people laugh. When he arrives at school and has two of the crankiest people on earth glowing when they see him coming. He changes peoples. He makes people stop and look up and be grateful. So that is what I will talk about at the table in 20 years’ time. How my extraordinary little man changed so many lives just by being present in his own unique way. #ISeeYourLight I love you Everyday!

John 22John 2017

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Social media addict?

Yesterday, I made the decision to remove myself from social media.

Yes, I did….

I deactivated my Facebook account and deleted my Snapchat.

I didn’t have an Instagram or twitter.

However, I do have accounts in all of these for my business.

On a personal level, I am not longer connected to social media.

AND I FEEL FABULOUS!!!

At first, I thought this was going to be hard. How will I survive without seeing everyone’s lives happening before me? How will I make it through a day without seeing how everyone’s first day of school was or how that girl in Bloomington is doing with the new baby. How will I make it without knowing how Ed the coffee guy managed to make it through the Park Ridge Farmers Market or how Bob from California is enjoying his new puppy?

This is how I did it. I replaced that time scrolling through social media with ME time. I looked at my son while I was talking to him. I asked him questions instead of nodding yes while responding to a post. I cleaned the oven, which was pretty cool! I did an amazing amount of marketing on milkshakes for my business and arrived into work early without being tired. While at work I read a book during the slow times and did a little extra cleaning.

It all seems so normal but for me it isn’t normal. I spent way too much time on social media. Doing all these extra things personally and professional has me feeling empowered and ready to tackle some more tasks. That’s crazy!!!!!

Last night I went to bed earlier then I usually do and actually went to sleep!  Like within 15 minutes. That’s unheard of!

This morning I woke up before the alarm and felt great.

I am pretty sure I was addicted to social media. Without it I get a little itchy, I want to just take a quick peek. I pick up my phone to click the big F (that’s F for Facebook) and for a second panic that it isn’t there. But, it’s getting easier and I am looking less.

Another reason I quit social media. It was helping me to build up resentments. I spend a lot of time with my son at home because autism doesn’t let us enjoy day trips out like most families. In addition, his chronic lung disease and oxygen requirements make it hard to just hop on out the door. Watching these assumable normal families enjoy the last few days of summer vacation was making me sad, not happy. Watching stranger’s lives that have no part of my daily life was making me resent them.

Without those visuals I can focus on the gratitude. The beautiful smile and hardy laugh my son enjoys at home. Our everyday hot dog lunches and “black popcorn” with water balloons by the dozen. The chronicles of the Boss (our puppy boxer) and homemade meals (not instagramed or facebooked) by my super BFF hubby! The best part are the text messages from the people IN my life with pictures of their kids first day at school, letting me know they are traveling for a sick family member or just asking to meet for lunch or coffee.  The important stuff!

You got the BUNZ hun!

Johnny’s BFF is an 18 year old girl named Emma. She is sweet when she wants to be and the polar opposite of that at times. She can’t help it because she has a nuero disability that causes her to lose control. However, John and Emma together is always just hot dogs, McDonald’s and short naps, always happy times.

We have very few people that can watch John for us. Actually, we have two, Erin and Auntie Patsy.  Erin is Emma’s mom and Auntie Patsy is our neighbor from the old house that we lived in for 17 years. She has become part of the family, the only “family” member that has taken on the hard task of learning how to be alone with John. We love her more than words can say, and Erin, of course.

One afternoon Erin had taken John for me while I worked. When I arrived home John had learned a new song.

“Anaconda don’t! Anaconda don’t! Anaconda don’t want none unless you got BUNZ hun!”

I bet that song is stuck in your head now.

We have been shouting it out just like that since he learned it. You have to have the emphasis on BUNZ, with a Z.

In March 2017 John came down with the flu. He ended up in the Intensive Care Unit (ICU) of our children’s hospital for 5 weeks. Thankfully, he recovered and was sent home on 4 liters of oxygen 24/7.

While in the ICU we met a really cool nurse named Katie. I really loved her vibrant personality and genuine smile. As an ICU mom for the past 12 years, I have sat many hours getting to know John’s nurses and vice versa. This nurse told me her story, with hardships and all, while smiling with gratitude. I loved that about her.

When John started to feel better his personality started to shine through again. He’s a clown that loves to make people laugh. He instantly adored Katie and her funny personality. One day he looked right at Katie and said “You got Bunz hun!”. Katie’s eye brows raised with a grin on her face while giving a puzzled look. She replied “Well, yes I do have bunz Johnny.”. Johnny pointed to the top of her head. Katie and I looked at each other laughing because we realized he meant the bun on her head!

After that, every time someone with a bun in their hair walked by Johnny’s ICU room Katie would stop them and ask Johnny, “Hey Johnny, what’s she got?” and Johnny would shout back, “You got bunz hun!”.

He had the entire ICU laughing.

Always making people laugh…

A few weeks later I was pushing John in his push chair into the bowling alley. There was a woman walking in front of us. She was a larger woman with a larger then average bottom and a bun in her hair. Johnny shouted to her “You got bunz hun!!!”

When she turned around I was already pointing to the top of my head saying “He means the bun on your head”.

7 months later I am still explaining the bunz comment to random people….  Ladies with bunz, men too….Johnny will point it out to you. Because he loves bunz!!!

 

 

What’s Next?

It’s been an autistic kind of day…

This morning John refused to talk to me unless we used the walkie-talkies. I enjoy when he does this because it encourages him to use proper sentences and good words. He keeps the volume so low on the walk-talkies that we can’t hear each other. However, we are standing right in front of each other. I believe the sound of the voice through the walkie-talkie causes a sensory issue so he keeps the volume low.

On the way out the door an older man walking a huge old German Shepard was walking by. John started chanting “Fuck, fuck, fuck, fuck…” over and over again. The man stopped and looked at us shocked. I quickly looked at him and said, “I’m sorry, he’s autistic, he’s just nervous”. The man gently said, “I can leave”. I said, “NO, we see you all the time, its ok. He has to be Ok”. All while John was chanting “Fuck”. The man said to John, “Hey John, this is my dog Jake”. John stops chanting and looks in their direction and says, “Jake, like Jake and the Neverland Pirates. Jake, Captain Hook, Mr. Smee, Sharky, Izzy and Skully.” The man responds, “Oh Skully, yeah I like X-Files, too”.  Next run in with Old man and Jake should go a little smoother.

We went to the last day of camp’s talent show at Indy Park. John is so well behaved at Indy it literally has me stumped. I have no clue why. Maybe because he loves it there so much. We spent an hour there listening to the team, greeting everyone and sitting watching the show. It was the quietest he has been all year so I really took advantage of talking to other adults without interruption. It was amazing!

As we were leaving it took everything in me not to cry before we got to the car. John loves this place but cannot attend because of his medical needs. They do not provide nurses and I can’t stay with him. I was sad because Special Olympics starts in September and he will not be there. I was sad because he is missing out on so many things that he loves, where he feels the most comfortable with the friends that make him feel normal and loved.

When we arrived home I let him eat “black” popcorn, didn’t feed him dinner and sat my depressed ass on the sofa. I was emotionally drained from having a good ugly cry in the car on the way home. John asked to go downstairs to play Wii. I was all for it, but didn’t follow him. I wanted to see if he could do it himself this time. He has seen me do it a million times.

I waited…I got lost in my phone…I waited a little more….got lost in my phone a little more and then popped up thinking he was way too quiet. Ill head down to see what’s up.

Scene: Our basement is small so the doors are pocket doors that slide into the wall. The bathroom door was half open with oxygen tubing trailing out. The smell of shit was in the air. I slowly peek in to find a few balls of shit on the floor, a little on the wall, all soaking in a pool of pee with his jeans and underwear laying on the floor soaked. John is sitting on the toilet humming and chanting “what’s next, Mommy?”, the question he has been asking all fucking day, while splashing his feet in the pee.

I managed to get it cleaned up while he sat on the toilet. I was amazed that he didn’t move off the toilet. I think he knew this wasn’t right and just wanted to sit there till it was gone. Kind of like what I want to do when I do something wrong….maybe it will just disappear?

All cleaned up, he jumps on the couch to play his Wii asking “what’s next?”  The bathroom is probably cleaner then when we first bought the house, BONUS!

My character defects like to creep in unintentionally. One of them is impatience and anger. Today, it didn’t’ happen. I only felt sadness. I feel like that is emotional progress…feel the feelings, walk through the fear, and keep the faith….

All day I have been listing off in my head the autistic quality’s that my son has.

The repetitive asking

The swearing

The need for a schedule

The lack of understanding of danger

He is intellectually disabled

He is beautiful, smart and so loving

Whats next blog

This is the face I love every day. It’s the face after the storm, after the hardship and after the madness. It’s the face of love and gratitude. He puts his head on my shoulder while patting my back saying “Gracias, mommy”. While we are just sitting there, after the storm. He puts on a hardy laugh while saying “I love you mommy”, just to see us laugh, after the storm. At bed, he asks one more time “What’s next?”, tonight the answer was “Tomorrow is Saturday, Chuckie Cheese because you earned it!”. He responds. “I earned it!” while his 12 year old body wiggles so hard with excitement.

#GoodNightSweetWorld

And tomorrow we will do it again…

Practice the pause

Practice-the-pause.-640x640

Sunday will be my father’s birthday. He would have been 76 years old. Sunday is also the day we moved into our newest home, one year ago. I feel like that was a sign. Dad always wanted us to move into a smaller home and take care of ourselves first. He said we were always taking care of other people kids. He called my house “Sunshine Rehab”. When he was in the hospital, I texted him a picture of his new bed all set up in the living room of my old house. The house was very large with 5 bedrooms and 3 ½ bathrooms. The living room had no other furniture in it other than Dad’s bed and anything else he needed. I used a folding wall to give him privacy. We wanted him close to our everyday activities so he could see what was happening around him. Not in a room with a window facing the alley or a neighbor’s house.

My biggest regret when it comes to my father was talking to him like he didn’t know anything. With the tone of a snotty teenager that thinks they know it all. As he aged he asked questions I deemed as stupid or uneducated because I knew the answers. I was impatience and judgmental. Why I thought I knew more than a man that lived more than twice my life span is beyond me.

This morning as I was cleaning up dog poop in the yard, no doubt with a puss on my face, I was listening to my neighbor’s 40 something year old son talk to her like she didn’t know anything. He was explaining things like she should already know. He was aggravated and snappy. A familiar sound since I talked to my father that way many times. As we age it’s hard to be patience with the elderly, until they are dying. My neighbor wanted her son to fix something mechanical. He was mad that he didn’t understand what she wanted and snapped, “I’m not a mechanic”. This woman is in her late 60’s early 70’s, came from Poland by herself with one child, started a family here in America working several jobs. She tells me stories how she did everything because her husband was not good at things or just wouldn’t do it, like mowing the lawn or fixing the car. She dropped the kids to sitters so she could work a 12 hour shift to help put food on the table. She loved her children and always made sure they had what they needed. One child lives next door to her now, which is the son that was talking to her this morning, the other son lives with her after his divorce. Her advice to me often in the last year is, “Don’t start doing things, then he will stop doing them because he knows you can. Let him mow the lawn it will keep him busy.” She would always add “trust me”, with a thick polish accent.

I wanted to reach over the fence and tell him to stop talking to her like that. I wanted to tell him he was going to regret it someday. One day he will hear someone else talking to their parents like that and a flashback will come in reminding him of how disrespectful he was to his mother. He will regret it and feel a sadness. He will pray his kids never treat him that way and that they respect the life he lived, for them. I know you love her. Because I have seen how you take such great care of your own kids.

While Dad was alive I wish I practiced the PAUSE more often.

Pause…Let him be right.

Pause…let him tell you what to do.

Pause…let him feel in control of his home and life.

We are teaching our children how to treat us when we are elderly.

Pause…and think about how much you love them.

Happy Birthday Dad! I hope you know how much you were appreciated and loved. Even if I was always right (wink wink). I love you every day!

Dad’s first selfie ❤ He was 72, always learning new things!

Dads first selfie