Anxiety got me like WTF?!?!

Anxiety just creeps up on me like a bad wedgy. One minute I’m happily dropping my son off at school next minute I’m running scenarios in my head about the things that COULD happen to him after I leave.

School nurses that show up 2 hours late and seem to think nothing of it are assholes.

My son goes to school with oxygen and a nurse is usually there to keep an eye on things. She needs to make sure the tank is full, that he is breathing ok, that he takes breaks when needed and that his oxygen concentrator battery doesn’t run out.

It’s not that hard.

So when a nurse arrives 2 hours late and manages to let the battery on his oxygen run out during her shift – the main job she has – I get angry. Anger is usually my first emotion. The program teaches me that anger stems from fear or hurt.  I have to ask myself why I am angry. I am angry because the nurse isn’t doing her job! Which spirals me into the scenarios of what could happen if John doesn’t have his oxygen.

It’s a vicious cycle that I need to stop myself in the middle of and chant “Let it go, let it go”.

What I do have control over is whether that nurse comes back. I also have control over teaching the aides and teacher what to do if a nurse doesn’t do their job or doesn’t show up.

I have control of how I react to the situation.

Before I got sober I had 2 personalities; confrontational or isolation

Today, I still have multiple personalities but they come from a better place 🙂 I can pause and live in the solution, right after an anxiety attack. I can stop myself from letting the crazy committee in my mind take over and pray, right after the anxiety attack.

I don’t know if I will ever avoid that anxiety but at least I know I can get through it today with a little more grace and dignity then I did in the past.

Now I just need to pray we find a reliable nurse that cares enough to show up on time. And I will continue to be grateful for the amazing staff at his school that support us!

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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…

Strategic thinking…

Today is neuter day for Boss, the dog. Poor little guy was so confused this morning. “Why aren’t you feeding me?” He tried to eat the flowers Kevin brought me over the weekend. I had placed them in a vase on our living room corner table. A table that was actually a bedside table for the huge bed and room we had at our last house. We downsized a year ago and life has never been so free of useless crap!!

Anyway, a neuter means a trip to the vet. It’s just Johnny, Mom and Boss. I have been planning my strategy to get out of the house as smoothly as possible since last night. I changed the plan a few times. At the end I did it a completely different way. Which means all that planning, scripting and thinking was a waste of time. Well, that’s how I roll when it comes to thinking.

I put Boss outside so I could prop the front door open without him making a runner. I was just praying John didn’t let him in while I was doing it. He is a slippery one that Boss. With the door propped I can get the push chair, lunch bag and back pack out the door in one pass and into the car. Return, let boss in and get the boys out the door. I have Boss’s leash in one hand and John’s oxygen tank in the other. I use one hand to guide John into the direction of the door while Boss pulls me to the door. It’s a funny scene.

Once at the car I get John in and walk over to get Boss in. He needs to be picked up into the car since I have a high SUV and he’s still too young to jump up. He doesn’t like getting into the car. Probably because the only time he gets in the car is to go to the vet. This trip will definitely be the final straw for him.

On the way into the vet office the strategy is the same but reversed. Johnny and I agreed he was working for 10 water balloons if he behaves in the office. When we arrive to the front door I opened it too soon and caught Boss’s paw. He made a loud dog crying sound at which time John chanted the F word at least 20 times. John does this anytime a dog barks or cries. I waited till John was done chanting before we walked inside. Once inside John was screaming at the dog to get down in a “level 4” voice. Level 2 is normal talking voice, which I encouraged him to use but this seemed useless. I began taking water balloons away, “9 balloons, 8 balloons, 7 balloons…”  With each balloon he decreased his sound level. But, it went right back up as soon as Boss became excited or jumpy. The receptionist at first was a little shocked by the noise but realized john is Autistic. I was so impressed with their acceptance and understanding. The one receptionist immediately put us into a room, hoping it would help John relax a little. In the room he became more anxious and aggravated with Boss’s level of excitement.

Finally, the vet came in to give me the estimate and papers to sign. We were out of there.

At this point, John lost all water balloons so we headed home to wait for bowling at 11am.

On the way out the door of the Vet John said, “Scared”

I asked him “Why were you scared?”

“Dr. Lestrud”

Dr. Lestrud is John’s Pulmonary Doctor. I believe John thought he was going to the doctor for himself.

When we got into the car I sat there for a few minutes trying not to cry. I wanted to cry because the people in the office were so nice. I wanted to cry because John thought he was going to the doctor. I wanted to cry because John didn’t feel safe and I didn’t prepare him for the Vet visit. I wanted to cry because this was just so overwhelming.

I cried because this was what I seen….

John at Vet

You wouldn’t event know how hard the last 15 minutes were by looking at him. He is in the car, safe and content. He knows he is going home where he is safe and happy.

How does a parent prepare their child for the hard world when they can’t get them out into it?