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

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