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…

#Healing

Summer fun is not so fun…

Today is Saturday. I am a business owner on top of a multitude of other titles. On the days I am not going into the shop I always check in with the video cameras to make sure someone showed up for their shift. Today, no one showed up to open the shop. So after getting a text saying she asked someone else to cover her shift but never told me so I could change the schedule, I had to pack up John and head over to the shop to open. This is where I start wondering why I thought I could be a business owner and John’s mom and contemplate closing shop and then slap myself out of it.

John doesn’t like to just get up and go. There is a process, a plan, a schedule that needs to be followed. Today, we were supposed to go to Rosemont at 2:30 for the Special Olympics Ice cream social. Next, home for water balloons. Next, Irish fest. We were not supposed to go to Josi’s at 12:15pm or any time during the day. After throwing his clothes and shoes on, driving to the shop he was pretty pissed.

When we got out of the car he tried throwing his oxygen tank at me. A guy riding his bike passed slowed down to watch. When we started walking to the door he tried pulling the tubing off. An elder man stopped to ask if I needed help. Once we got to the door I knew I needed to literally shove him into the store with tank, lock the door and dart to turn off the alarm. If John heard that alarm our day would be ruined. So that is what I did unannounced to John. John didn’t appreciate the shove but with a shocked look went to sit down at the nearest chair, thank God!!!

Once the alarm was off and doors locked I worked on opening the store while John sat on the chair chanting and screaming at me. “Mom, mom, mom, Get over here right now, I said get over here!” Over and over again. Apparently, I say that to him a lot.

A customer came to the door so I opened warning them that the shop just opened and product isn’t ready for about 5 minutes. I apologized and continued to get the shop ready while John continued chanting his chant. Meanwhile, I was texting everyone trying to get them to come in or friends to watch John, there is no way I can sit here all day with John and tend to customers.

Finally, the newest girl hired said she could make it. Two girls have been suspended and don’t start back till Monday so I didn’t even ask them. One girl was at a baby shower. I fired the girl that didn’t come in. It was the easiest fire ever since she was literally a backup, ironically that couldn’t back us up. I just took her off the schedule and told the team they can no longer use her as a backup. Didn’t even tell her.

When the girl finally showed up I took my phone and sat down next to John at the table he was chanting at. It took all of my strength to not cry. I sat there staring at John, he stared back at me finally saying nothing. I took a deep breath and started chanting to myself “God help me, god help me, god help me”, while holding back tears with my back to the audience at the counter.

Since the last night shift didn’t let me know we were out of strawberries, blueberries, donuts and a bulb was out; it was off to Target.

It had to be Target, because that is the only store John will go to without a fight. I’m just glad all the items I needed were at Target. Mission accomplished, dropped off at the shop and home we go!

On the way home he sat in the back seat the quietest I have ever seen him. So quiet I had to ask if he was ok. His beautiful face just looks over at me with a smile and says “I’m ok mommy, stop asking, I’m ok”.  That his new thing, telling me to stop asking even if I only asked once. Was this the calm before the storm? In my head I am trying to figure out how to keep him this calm….

Cancel Rosemont

Cancel the Irish fest

He’s way off his game.

Home – FINALLY – Kevin comes home early to relieve me so I can go to jewel for dinner, pet store for food and hardware store for a fly swatter! Ahhh…a break for me!

He has his water balloons… all is right with HIS world. Until daddy tell him only 5, not 10. I’m outta here….

I managed not to cry in public, only in my car…

I can’t wait to go to bed….it’s only 4:30pm….

People are texting me asking where we are….no show again.

I’m watching all the other mom-entrepreneurs take their kids to work and be good at it #SmallBizMom…no go here.

#Feeling Sad

#KeepTheFaith

#GoodNightSweetWorld

I tell this story to heal, not for sympathy….I need to heal and others can heal from reading, hopefully. Sharing our experience, our strength and our hope is how we heal. #Healing

tell your story

The Hubs: 2017 Edition

My hubs…

Some days I refer to him as my BFF, others not so much. If you are going to have a child like John, the trifecta of disabilities (CDH, Epilepsy & Autism), you better like who you live with because you will be spending a lot of time with them.

Some days we are all we have. No one is inviting us over to BBQ’s and people surely aren’t bringing their kids over to play with my son. At the end of the day he is the only person I can vent to, tell how I feel or just sit in silence with. It’s comfortable, its safe, somedays it’s hard and somedays it’s just perfect.

We separated for two years in 2012 (I think, maybe 2011). That separation is what saved our relationship. Before we separated I was almost 2 years sober, he was an active alcoholic. He left me telling me that I was doing great things and he was holding me back. I made sure he knew that was a great excuse but it’s really because he’s too scared to grow with me.

The first year we lived under the same roof, the second year he moved out into his own condo a few blocks away. I started dating in the second year. Nothing great to talk about. It’s amazing how many men my age live in their mom’s basement apartment, hate their ex’s and just are so lost in who they are. I had literally no success, obviously. I eventually just focused on me and building a business.

During those two years Kevin always treated me well. He treated me better while we were separated then he ever did while we were together. He stopped by the house every night to see his son, he fixed what needed to be fixed, he cooked, cleaned and was an amazing example for who a father should be, except for the part about sticking around in a marriage.

John became ill in 2014 with the flu. He ended up in the Intensive Care Unit (ICU) of Children’s Memorial for one month. At that time, we didn’t know if John was going to survive. They were using words that would prepare us for incubation and what happens if he didn’t start breathing on his own. After about 3 weeks John turned the corner. He started sitting up, breathing and laughing. We were amazed and so grateful for everyone involved in saving our son. It wasn’t the first time and wouldn’t be the last.

During those 4 weeks Kevin and I were carpooling to avoid the $15.00 a day parking fee at the hospital garage. He would drive over after work texting me when he arrived and I would go down and take his truck home while he went up with John. Some days we would go home together, clean up and head back to the hospital. We would sit and chat about John’s past and how strong he is. We gave each other huge praises for keeping him alive. We talked about the good times and the hard times. During this time I was in the process of opening up my shop. Kevin was right there helping with the build out, getting permits, supplies and contracts. He was amazing.  I asked him one day on the way back to the hospital, “Why are you being so good to me? We are not together anymore, you can just move on”. He said, “This is for all of us. Just because we aren’t together doesn’t mean we aren’t a family”.

Kevin is a man of few words but sometimes he amazes me with the words he speaks.

I know he struggles with his own demons, I have seen them. But, he really has the best intentions for his family.

Today, I can’t imagine being with any other man. When I am angry at him I imagine what it would be like. I let my crazy mind travel into places, imagining myself with another man or running away by myself to a deserted island. The scenarios I create in my mind always end with me thinking Kevin would treat me kinder. Or Kevin wouldn’t judge me like that, Kevin would have made it all OK.

Every Sunday morning he brings me breakfast in bed. Every night he tucks his son in to bed. Every day he tells me he loves me. He is humble. He is kind. These are the things I need to remember when times get tough.

#GoodNightSweetWorld