facing fear

“Why are you putting up roadblocks?” #coaching #MomshellConfessional

Sitting in my coaches car, waiting for my son’s IEP. I threw a huge roadblock in front of my flow. “I would have to have a car to keep him from killing me if I choose to homeschool him.”

“I would have to have a car to keep him from killing me if I choose to homeschool him.”

Those words actually left my mouth. We had been talking about setting up a curriculum for the summer for Ben. Subconsciously I tossed the biggest issue I could out in front of me that I could, all while I was suppose to be reviewing and preparing for Ben’s IEP.

My coach asked me bluntly why I was roadblocking. She didn’t use that term at first. My confusion was evident so she broke it down into a much more visual example.

“You have a bad habit of putting caution cones and roadblocks in your way. Big bright obstacles that keep you from the direct path.”

Thinking about it I do. It is part of what makes me appear to be an amateur and part of what makes me appear to be a fool. Mostly it slows me down.

What do I do?

When I catch myself doing this I open myself up to the endless possibilities the universe puts in front of me and have a little faith and trust that everything will fall into place for my highest good.

Mantras seem to be helping.

 

Peace Love and Great Vibrations,

Steffi

#failure #coaching #autism – My challenge for this past February

I Hate Paperwork.

It gives me anxiety like no tomorrow.

I managed to put together every shred of paperwork in my house and then sat for the majority of the month just staring at the 3 large and one huge reusable bags overflowing with paper.

I avoided them… I.e. I did everything in my power to not be in the room with them.

So finally the last full weekend of the month I finally sat down to do the papers. I dressed in my nicest top, put on a pretty bra and my nicest jeans, I packed up the bags and drove to a friends house. Two cups of coffee, one sandwich, and one long-winded lecture later I began.

Eight hours later I was still going through the papers on their kitchen table. Two bags held files that had been sorted and organized; one with the taxes, hubby’s stuff, my stuff and all the other miscellaneous important stuff, the other bag was filled 4/5ths with Ben’s IEP’s and medical record. On the floor there was a large box was filled with papers I needed to sort into; recycle and shred.

I was one bag away from finishing my paperwork on my RESPITE day, when I got three texts.

“Come home please

Ben is missing

Hurry”

My heart hit the floor.
I dropped everything. Literally, I dropped the papers in my hand.  Bolting upright I ran for the door, the words, “Ben is missing,” came out as the screen door slammed. I drove down the street like a bat out of hell. There were cops in my neighborhood when I got there. No one told me what was going on.
Hubby was freaking out, Unicorn was walking down the street with a cop. I parked the car and started thinking like my son. The open gate across the street called to me and I walked through it. On the next street, I lost all signs of my son.
Panic set in. I walked down the street hollering that my son was missing and asking everyone on the street at almost 9 pm  if they had seen him and to help. I wanted to pull my hair out and scream and cry. How could either of the adults in my house have let him run off? How long had he been gone? What was I going to do if we didn’t find him? I walked almost twenty blocks as I circled back to the house.
“Has anyone gone down the hill?” I cried out to the police officer standing in my yard. I was trying to remember I I had put the flashlight back on the hook, praying that Ben hadn’t taken it or pulled the batteries out again.
“We found him”.
The panic eased and all I wanted was to hug my son. Then the rage hit me. “Where is he?”
D and Unicorn tried to half-heartedly stop me as I stormed into the house and down the stairs to my son’s room. I wanted to beat some sense into him, but I didn’t.
I marched my punk ass, two days away from being seven, son up the stairs to apologize and say thank you to the pretty shocked police officers. At that point, I found out how the police had been involved.
My half-naked son had wandered into the first unlocked house. The wonderful people figured out pretty quickly that kiddo was special-needs and called the police.
We were incredibly lucky that Ben was found safe and sound. Most kids with autism that wander off into dangerous situations.  Wandering AKA Elopement is terrifying. It also causes more paperwork to deal with.
Oh and if you are wondering my paperwork is still sitting… waiting for me to finish it. I’ll get back to it in a few days.
Untill Next Time,
Confession of a Special Needs Mom

#poerty #oblitusverba – Word of the day – extent

Can we believe we are enough?

“A flock of ravens, crows, small birds I couldn’t name, eagles and hawks my guides.”

The solar winds at my tail I flew like in a dream.

I could hear the drum calling.

My mind constructing Mythos as I flew through the stars.

The earth’s scars surrounding me.

The vastness of what lived beyond my insignificant spark engulfed me.

It was as if I had stepped foot for the time on Terra.

Sensing a vibration I looked up.

Planes and birds aloft.

How far we have come since the air became no longer for birds alone.

 

Have we finally broke through the veil of willful ignorance?

 

Will we now soar the starbelts?

 

Will we travel now that the stars have opened up to us?
Can we believe we are enough?

 

 

I have to wonder… A #parenting #reflection

I have to wonder… A #parenting #reflection

Recently a politician in the USA said she feared for her grandchildren’s future. She spoke of the environment and climate change. When the ice sheets melt and the ocean changes, changing the weather what will we do? Our children will on day face problems we can barely imagine. Speculative fiction is one of the ways we as adulting adults can look for solutions. Reflecting on life now and viewing it from a new perspective gives us more to work with.

I often find myself saying, “I have to  wonder…” The thought of wonderment and exploration fill my mind and as I watch my son I have to wonder. I wonder about the beautiful things he can and may create if given the opportunity. I wonder what technology he will have that I can’t even imagine right now. I wonder if he will marry. I wonder if he will build or paint or play with numbers and words.  I wonder where he will be safe and if he will be able to live on his own.

 

My son is tenacious, imaginative and a problem solver by nature. He has also died a number of times. I credit his desire to explore and push every boundary that he encounters to having so many near death experiences before the time he turned one. He can take anything apart with a screwdriver and enough time. Then he will lego the pieces back together in odd ways to create what he wants or needs. His imagination is vast yet he is only now finding that words have meaning.

I started reading to him the first time I could get to the NICU.  I was on book 18, full chapter books. I remember the day I was told he was deaf. Ink Heart… I never finished it. I couldn’t bring my voice back. He suffered for my pain, even though I do the best I can that event traumatized me.

His visual primer included Curious George and Cosmos. Now he watches science documentaries with his father. He watches the ice melt. He watches species go extinct. He watches fires burn and hurricanes destroy the planet. Yet he carefully watches the universe.

So I have to wonder what his life will be like in four years. I have to wonder… What will he push me to create? What will the ripples create?

I have to wonder, “What steps will be taken from here onwards to give him a home worth being proud of?”

#NICU

#SCACETALK

#parenting

#climatechange

#imagination

#questionstohumanity

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Tuesday Night – #PTSD #autism #NICU

Tuesday night was rough.

My son fell down a flight of stairs. Less than ten minutes later he and I were at the ER. I had no coat on and he was glued to my chest all 41 pounds of him. My hands were shaking and I couldn’t focus. The triage nurse guided my hands to the papers to fill out. As many times as we have been in the ER it amazes me how few nurses realize or know that he is profoundly deaf and autistic.

On Ben’s last ER visit he was given a medication that causes serious disorientation and sedation. He did not react well to going back into T1 (Trauma Room 1). It took all of my strength to get him on the bed to be seen by the nurse and doctor.

The poor doctor didn’t know Kiddo’s routine. “You have to look at his ears first, it’s his routine.” Kiddo calmed down a little but not much.  Onto the floor he went as soon as the doctor had shone the light in his eyes. Major meltdown in progress he began head slamming on the concrete.  

Back into my arms and onto a roller chair after a lot of signs and convincing. Then came the x-ray tech. An Autism mom herself she walked in signing.

Thank you to whoever had her scheduled.

With the help of an EMT 2 x-rays got taken. Both appeared to be clear of any major issues.

The nurse came back in with the same medication from Ben’s last visit. He did not react well at all. Sitting on a visitors chair, her got a shot to his thigh, while restrained by three people. He would do anything to stay away from the blue sheeted hospital bed.

“Give him a band-aid!” Ben took it and put it over the injection site. He calmed down a little more, looking at me with anger and betrayal in his eyes.

Then my hell truly began.

Ben’s eyes began to quiver as the sedative began to take hold. Drool dripped from between his lips. The fear in his eyes became unbearable for me.

For a split second, I was back in the big yellow farmhouse. In front of me was a ten-year-old girl with cafe-latte skin and jet black hair. The craniopharyngioma was killing her slowly and painfully. She was coming round from a non-conforming seizure. When she could talk again, she started to talk about heaven, Gramma, Carrie,  Angels and Jesus. I think it was Mom who asked what Jesus looked like, then Aimee fell into another seizure.

I snapped back to the ER and my son who was sitting in a chair was wavering back and forth, side to side. I asked him if he saw the butterflies and angels. His eyes darted around the room like lightning, pausing and focusing intently in multiple places.

“Do you see Great-Gramma?” I signed.

His eyes bored right into me and he nodded. Suddenly his eyes began to look around wildly again.  A vacant stare replaced the fear and his normally precocious curious gaze. All I could think of was the week I left him alone in the

All I could think of was the week I left him alone in the NICU.

Carrying his dead weight to the gurney I sat down as a nurse walked in from radiology. She was excitedly talking about the food in the breakroom celebrating her 40 plus years at the hospital and her last hour at work. We were wheeled to radiology.

My mind was racing. I laid kiddo down on the narrow table. I was drug back into another memory.

The 18 month-old, blond cherubim, was swollen beyond recognition.  My youngest sister lay in a PICU bed, brain-dead and on life support. Her tiny body too far gone to donate any organ, I begged any god in existence to bring her back.

Tears rolled down my cheeks as the image of my sister and the image of my son melded. I watched the CT machine stop. Ben was laying there, his toes wiggling. His eyes wide unable to move and still hallucinating, I lifted him and sat on the gurney.

Back in the room, we waited. Trauma Room 1 has no television and my book was in the parking lot. I was alone in my head.

The nurse asked me if I needed anything.

Water.

The doctor asked if I wanted a sedative.

No thank you.

I talked to the nurse about the NICU. She spoke of her first marriage.

She spoke of her first marriage.

I felt like a fool for talking about my emotions and my experiences. I discovered I need more support.

The test results came back and the doctor said, “No signs of bleeds and no broken bones.”

Relief flooded me.

Ben sat up a few minutes later, then collapsed back on top of me. This happened every five to seven minutes for forty-five minutes. Then he puked on me. The vomiting scared me more than anything else. Ben had a Nissen Fundoplication done at nine months and it is still very tight. Meaning he can’t easily throw up.

Twenty minutes later we were discharged. Between the flood of memories and watching my son constantly to assure myself he was breathing I didn’t sleep much at all that night.

I learned some very important things while I was in the ER Tuesday night. Triggers really do come in all shapes and forms. My son’s injury triggered so many memories. My panic and fear opened me up to being able to process old and buried memories. While the grief has lessened over time my PTSD still sucks.  

Now I just need to relax and breathe.

Peace.

SRWM

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#FinalisFinibusTractus – Day 1

Both!

The thought that “we are not alone,” fascinates and frightens me, in an exhilarating way. It is like driving on the side of a mountain with only inches on either side of you. One misstep and we will careen off the edge. However, if we are cautious then we will find amazing views and  many new experiences.

I know that when I think about the unknown aspects of an entire culture my mind races. I wonder if I will be able to find any similarities between said race and humanity. Because we are, “all star dust” There is the chance that if we are exceptionally lucky we have a lot in common with our celestial neighbors.

The fear that life beyond our little puddle in space will be far far advanced from us,  worries me because their intent is unknow. Humans seem to be pretty violent creatures, we have bombed the crap out of our planet and destroyed many ecosystems. So if our neighbors are like us, they could have our violent tendencies too.

Overall, I have to hope that we will find life out there somewhere and that for the most part, other lifeforms are peaceful in nature.

 

Peace!

SRWM

 

 

Card of the Day – Seven of Cups – Fear

Seven of Cups

The Seven of Cups – Fear

Fear is symbolized by the passing of water and the wave of nausea that accompany fright, anxiety, worry or terror. Fearful, you close up and hide (closed vases seeking cover), become emotionally withdrawn and inexpressive. You become blocked. You begin to see or invent piranha, lions, insects, sea monsters, prickly cacti, lurking men, snakes, and tidal waves everywhere. You grow phobic or paranoid; orchids turn into attacking monsters. Your fears get buried in your subconscious (the ocean bottom) and manifest themselves as bad dreams and nightmares.

As in dealing with anger, you can convert the red adrenaline of fear into energy, alertness and action. The large incense burner symbolizes your gathering of courage to smoke out fears. And of course, there is healthy concern, so learn to discern. In order to grow, go into your fear, feel it and do it anyway. On the other side of fear is fortune.

Voyager Tarot : Intuition Cards for the 21st Century

James Wanless, Ph.D.

Artist Ken Knutson