Monday, July 13, 2020

Autism Answer: I Want To Point The Camera And Smile At you - A Home for Family

"I want to point the camera and smile at you."

When Jory (my oldest son) was five he would say this, wanting to use my camcorder to take a video of me. Even now, more than twenty years later, I hear the sentence in his sweet five-year-old voice. 

I hear it in part because I have remembered it so often, holding it close the sound has yet to disappear from my memory. But also because that is still, more than twenty years later, who Jory is and how he likes to view the world.

From his earliest years, Jory has loved to see the world and the people in it as part of one connected movie. Everyone plays a part and is written in for a reason. Over the years he has grown this vision into something extraordinary. From being too bossy (he was the writer and director of his brothers, he was quite sure!) to being too laid back (whatever happens, happens and it's all groovy man) to fighting for his right to choose happiness even though the world is filled with war and hunger (he wrote about that HERE) to now, as a father of three and husband to one, he sees his role as all of the above and mixes it up as best he can.

He is writing and directing his story, but his story is not only his own and so he asks and allows the narratives of others to influence his. Not only that, he also reaches out and asks for help. Ideas. Collaboration. 

This is how he sees the world: We are all here together experiencing this epic story and it is incumbent upon us to be both inclusive and decisive. Know your goal well and invite others to help you get there. Jory has a way of believing in his independence and responsibility while not shying away from reaching for support from others.

He loves to bring a team together and inspire everyone to share their strengths, ideas, and hard work - something he does well as a movie theater manager. (He misses it for sure! Movie theaters are still closed due to COVID-19.) 

At the moment he's using his skill as a gatherer of community and support to help his family find a home. 

They are not homeless. And in truth, they don't have to be homeless even if they can't quite find something before their current living situation disappears. However, family help options are slimmer than usual and not the forward motion he and his family are working toward. (A strange and wonderful shifting of places is happening everywhere in my family.  It's exciting! But because we are all in this unique transition there is less reliable space to offer.)

The home he and his family are living in at the moment is my mom's home. However, it will no longer be hers by the end of the summer (which, by the way, is exciting! She and my brother Dar are embarking on an RV life adventure!) and so Jory, his wife, his daughters and soon-to-be born son are looking for something affordable in the area. Admittedly, they are happy to move away from the area if Jory can transfer to a Regal Cinema near a new home. But he truly does love his location and the people he works with. 

And, as is Jory's beautiful way, he is reaching out and inviting us to play a role in this story! 

He created a GoFundMe fundraiser, in hopes that the financial burden of first and last rent, rent applications, and moving in general, can be shared. 

He and his wife are reaching out to everyone they know to ask for ideas, advice, and recommendations. 

Jory's fundraiser: A Home for our Family

Admittedly, they are nervous. Transitions tend to create anxiety even in the best and easiest of times, but when you are trying to find a home for your family and start on an unknown brand new journey (not only will this be the first time they live together as a family without other family members there to help, all the helpful family members are in transitions of their own and will likely be quite far away) the anxiety threatens to turn into full-blown paralyzing fear that leaves you sitting around hoping your mom will swoop in and fix everything. (Or, wait. Is that just me? Maybe I shouldn't have said that out loud. tee hee!)

Well, this is me - his mom - swooping in and not fixing everything but asking if you are able to play a role in this story and help us build something: a home for his family out of a community of characters that cares.

If you are able to contribute something financially, thank you! If you can share the fundraiser on your social media, or in an email to someone you know, thank you! If you have ideas, experience, thoughts that might help them find a safe place to live, thank you! They are hoping to stay in the Simi Valley, California area (again, that's where the Regal Jory works at is) but are happy to move elsewhere. This is an exciting time in their lives and beginning somewhere new could be part of the Universe's plan. It's hard to know. This movie is not yet at its end. And we are not unaware that creating something beautiful is always possible and not location dependant.

Regardless of whether or not you are able to take an action we can see, I trust you - who have read along - are playing a part in this story. And for that, I thank you!

In the words of five-year-old Jory: 

"I want to point the camera and smile at you."

Hugs, smiles, and love!!
Autism Answers with Tsara Shelton (Facebook)

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Link to Jory's GoFundMe: Fundraiser by Jory Shelton
If you want to email Jory with ideas or recommendations:
If you'd like to connect with him on Facebook: Jory Shelton


Tuesday, June 30, 2020

Autism Answer: Fort Building with Big Box Play

My oldest son, Jory, is famous among family and friends for being the most elaborate builder of forts. (He called them a "base") No furniture, blanket, or heavy item for holding things in place was overlooked when he was in base-building mode. He would take over the entire house building a base that had two floors, a tv room, a game room, you name it! 

And now that he's a dad (two daughters and a son due in weeks!) his base building has grown into something equally as beautiful - connection building. 

He connects with his kids and remains playful. Also, he uses all the furniture and we have nowhere to sit and sip coffee.

So it almost felt like coffee time in our family home was being offered a rescue when I was given an opportunity  to try out a BigBoxPlay system! It's a cool fun way to build a base without using all the furniture and blankets! ;D

From Disabled World: "Disabled World was offered a BigBoxPlay for free from in consideration for an honest product review article. Like all review products Disabled World receives, the item was donated to a third party."

Insider Info: I was that third party!

Simply Put: A Big Box Play modular system is a cardboard box style of fort building with previously prepared easy to build pieces and parts. It's meant for kids between the ages of 2 and 8 (my granddaughters are 2 and 3 so we were perfectly matched!) to have a little fun with building, playing, imagining, and creating. 

I put it together - with a little help from the girls - according to the directions. And then my son, their dad, come along and got creative reusing and re-imagining a few parts and pieces to make something a little different. It was perfection! And precisely what the BigBoxPlay company encourages. 

We have had the castle fort built for over a week now and it is still standing strong (despite having gotten a little wet from our sprinklers, we keep it outside) The girls like it, and so does the dog.

I offered to review the system and figured it would be nice to share my thoughts with you, too! 

"BigBoxPlay is an indoor playhouse that you build with your children. My granddaughters (aged 2 and 3) and I chose to build it outside because, well, it is quite big! Hence, "Big" box play. ;D

My granddaughters are a bit young (and impatient) to help out much in the building process, but they did help. And we had fun. Mostly, though it was her dad and uncle and me that built it. It is fairly simple and modular. So when my sons decided to get a little creative with what went where, they were easily able to. Which resulted in a cardboard box style castle for my grandaughters that is custom made for them! The system is durable, fun, and can be decorated with crayons, stickers, paint, etc. (I drew a heart on it and my granddaughter got mad at me because it is her castle. giggle!) 

It takes up a lot of space, so we keep ours outside. We were concerned that it wouldn't last since it is made out of cardboard, but the cardboard is surprisingly durable and it still stands strong! After a week of rough play and even getting a little wet from our sprinklers. 

If you are looking for an indoor playhouse that can be built as a family, reimagined and reshaped, drawn or written on, and is likely to bring out the playful side of you, then I recommend BigBoxPlay!"

I'd like to add, as I think the Big Box Play website itself mentions, the tunnels and spaces inside the system are particularly attractive to kids who seek small spaces. This is common in children with sensory challenges and may offer a safe space to spend time in. Of course, it may not. I just felt it would be pertinent to mention.

So now we have a fort outside and our furniture is safe from Jory's base building. Coffee time in our family home is now complete with comfortable sitting space! 

I hope you are able to do something similar with your kiddos this summer. Something hands-on and together, fun and creative, and something that protects your coffee time! ;D 

I know we are all still in a strange place in the world. Things are uncommon and bringing up important but sensitive discussions and new ideas. In the meantime, we can get down with our kids and connect. No matter what happens, being connected with our children (I love doing it through play) will help us make the most of it. Build a fort, get inside, and play. 

Hugs, smiles, and love!!!
Autism Answers with Tsara Shelton (Facebook)  

Link for  BigBoxPlay
Link to all articles, news, and reviews on Disabled World 

Monday, June 1, 2020

Autism Answer: COVID-19 In Small Town Texas - My Story

“I’m going to isolate myself in the back bedroom. I have a cough, slight fever, fatigue, headache, and I can’t breathe. It seems like I need to stay away.”

I said this to my husband as we drove back with his barbeque sandwich from the Texas town nearest our small Texas town. 

For the next few days, I struggled with the cough, barely a fever, serious fatigue, headache, and shortness of breath. I did as I’d heard and read; stayed home and didn't go to a doctor or hospital, did my best to isolate, waited to see if my body could simply fight the illness on its own without spreading to others.

Obviously, I wondered if it was the novel coronavirus 19 but, regardless, I was sick and didn’t want to share that sickness.

However, after a few days (three, I think?) I was left with a cough, horrible shortness of breath, and fatigue, and I began to be scared. I couldn’t keep my eyes open, I felt like I was drowning. Also, my husband is nearly 70 years old and black - and it becomes necessary for him to visit and help our black family members, particularly the older ones, often - most of them specifically at risk, so I truly wondered if I needed to be more forceful with him about the isolation. 

In a brief moment of awakeness I looked up the nearest COVID-19 testing center to me. According to my search, it was forty minutes away and I needed an appointment and/or recommendation from a doctor. I was so sick, honestly, that the thought exhausted me and I couldn’t do it. Isolate, social distance, wash my hands, wear a mask, these things are what they would tell me even if I did prove to be positive, so stay home and do that I told myself, passing out and struggling to breathe.

Two days later I was not worse but no better. I called the nearest hospital and asked for advice. “We can’t tell you what to do but we’re here, we’re here,” the woman said kindly.

I was so tired but not sleeping because I couldn’t breathe. I crawled back on my bed and silently cried.

The next day I asked my husband to take me to the E.R. 

He took me immediately and when we got there they would not let him in, only the sick person. Me.

They asked me COVID questions, and I answered honestly. My cough was slight, my fever gone, my headache gone, but the fatigue and shortness of breath intense indeed. I had to lean against the wall to answer all of these questions. 

When I was seen I answered the questions again, tried my best to be upbeat and friendly, not a suck but honest about my condition. They asked if I thought I had COVID and I answered honestly, “I don’t know but I think have something.”

Chest X-rays showed something small on my lungs, nothing shocking. My oxygen levels were good. We wondered if it was anxiety. I was pretty sure it was something else. “Bronchitis, maybe?” they decided and offered to give me a steroid shot. I was so sleepy and desperate for breath. “Yes, please, anything.”

I wondered why they didn’t test me for COVID, but was too unwell to think straight and ask. I had another moment of shock as they gave me my bill (I have insurance, but over $1,000.00 was left for me.)

When someone from the hospital’s hospitality department called me the next day to check on me, I asked. “Why didn’t they test me for COVID?”

“Well,” she replied, sort of hesitating, “we’re regulated by the state and they have strict rules about testing. We can’t test you unless you have all of the symptoms and we rule several other things out first.” 

“Huh, okay. I just wondered because both my husband’s age and race make him particularly at risk. Anyway, thank you.”

Two days later I felt the same, no worse no better, and I called the local medical clinic and made an appointment to see a doctor.

Again, they would not let my husband inside and greeted all of us at the door with COVID specific questions. Again, I answered honestly and was asked to bring my circled paper to the receptionist, pointing out my symptoms as I signed myself in. I did that.

Eventually, after struggling to breathe and trying so hard to be upbeat and friendly, I was met by the doctor. I was immediately lucky enough to suddenly have a long moment of comparative comfort (this did keep happening over all the days of my illness, I would have waves of feeling fairly good and get oh so hopeful that finally I might feel better, only to have the wave crash down on me and bring me nearly to my knees with fatigue and a feeling of being unable to breathe).

Again, the doctor asked the questions and I answered honestly. After he listened and looked and measured, he agreed that maybe I had bronchitis or walking pneumonia. “I’d also like to test you for anemia if you don’t mind having labs done?” 

“I’m happy to have lab work done. I’ll do almost anything just to feel better. Will you test me for COVID?”

“Well,” he began, “we’re regulated by the state. I can’t test you for COVID unless you meet so much criteria and until I rule out a whole bunch of other things. Even if I call them I’ll be on the phone for over an hour only to hear no.” 

“Wow,” I said. “That’s not cool.” 

He didn’t reply, but sent me on my way for lab work and promised to be in touch with results. He also prescribed steroids and antibiotics for bronchitis and pneumonia. (And I was gifted with another bill of nearly $600.00 - thank goodness they let you pay later at these places.)

Before I even picked up my meds, at the urging of my mother who had just easily gotten herself a test for  COVID in California, I tried finding a testing center again. 

This time I found one only 35 minutes away in a town I am familiar with. Something about how desperate I was to feel better had been stopping me from being able to do a better job of seeking help for myself, but this time I didn’t feel as overwhelmed and called to ask them if I could come in.

“Of course! Come on in! We’re open till 8PM. No need for an appointment, just bring your insurance.” 

“Oh, wow! That was so easy. Everywhere else has shut me down.”

“Really?” she asked, sounding authentically surprised. “But, why?”

“Something about being regulated by the state.” I had a sudden crash of uneasy breathing and fatigue, so I quickly thanked her and hung up the phone.

The next day I showed up wearing my mask, coughing, and struggling for breath. They asked me to wait in my vehicle while doing my paperwork. They met me out there to first ask my symptoms, check my vitals, and swab me for flu and strep. Simple tests that were not fun for me but seemingly pretty easily done. 

The flu test came back positive for flu A, I was negative for strep. Yay! I had the flu! Now I made a little more sense to me. Why on earth had nobody tested me for flu before this?

I waited a while and was met by a physician’s assistant who did the COVID-19 test. She asked questions and agreed with my doctor, only she had more information having done the flu test and sounded more certain, I had a flu, and now I probably also had atypical pneumonia and maybe bronchitis.  I admitted to her that the doctor I had seen the day before said the same thing, prescribed medications for me but I had yet to pick them up. “Take the steroids and the antibiotics,” she said, looking at me with piercing eyes that cared. “If you don’t this will probably get worse. Tell me you’ll take them.”

“I will, I promise,” I said, almost shyly and slightly ashamed of being caught not taking care of myself.

I did as I was told: took my medicine and got better.

A few days later I got test results back. I was not anemic and I tested negative for COVID-19.

Okay, cool!

But boy did I wonder a few things.

Clearly, COVID is on the minds of every place I went with questions about my health and my similar to COVID symptoms. They were screening with specific to COVID questionnaires at all the entrances, not allowing anyone other than the patient or a minor patient’s guardian in because of COVID, yet they could not test me for COVID. Not until I somehow proved over and over that my illness was not other things. In the meantime I was given hefty bills to pay and a feeling that they didn’t think it was COVID (since I wasn’t tested). Also, it took several different medical locations before I was tested for the flu. Why?

The state seems to not want to know if I had COVID. My husband thinks they avoided testing me for the flu because there isn't enough money in it for them. I don't know about that, but I do know that I wasn't going to be tested for COVID-19 easily, even though I had several symptoms and was asking about it, so whatever the numbers are regarding COVID positive people in rural Texas, there's no way they're right. No way. We aren't tested unless we work at getting tested and it isn't as simple as going to our local hospital or clinic.

I was sick and admit I wasn’t the best advocate for myself. The energy it took to show up, answer their questions, was a lot. I did ask about the test, but didn’t push for it. I admit I didn’t feel I needed to know whether or not I had COVID I just needed to know what I did have. I knew I was sick, so I isolated, washed my hands, was a much better person regarding caring about not spreading my illness than I ever have been and I plan to be that way from now on (I am grateful for learning that during this strange time in the world. How my, “oh, I’m fine, I’m okay, I don’t have to be careful because I’m tough and rarely get sick but if I do I’ll handle it,” attitude was not just foolish for myself but putting others at risk.) but I do think that knowing the numbers of people who do have the virus is useful for the state. 

A state that regulates the test into barely being used.

I'm glad I feel better, I'm glad I didn't have COVID which is a highly contagious selfish virus. But I only know that because I kept working at knowing it.

I did not need to be added to the COVID-19 positive people here in rural Texas, but how many of my neighbors did or do? It is really hard to know.


Image: Me laying in bed while sick and sleepy

Monday, May 25, 2020

Autism Answer: In Service

My youngest with my sister's youngest.

Today is Memorial Day in the USA. Memorial Day is set aside to honor and remember those who have died while serving in the United States Armed Forces.

I confess, that while I have no struggle with honoring and remembering people, I am deeply uncomfortable with the United States Armed Forces.

However, it is easy for me to use this day as a refreshing of, and reflection on, my passion for honoring and remembering the value and complexities of being in service.

A desire to be in service, I suggest, is innate in all of us.

But too often we refuse it. Or when we choose it, it is by stepping into an oversized system that is built to simulate a sense of being in service. Those systems almost always include aspects and opportunities for true service but rarely are entirely holistic or sustainable when put to the test of their proposed mission.

But we do all have an ability and desire to be in service.

We can do this daily by being willing to inconvenience ourselves, divert from our scheduled plans, even put ourselves in danger, to take time with someone reaching out.

It is true that sometimes people don't reach out until they are in a dangerous state. It is true that sometimes we put ourselves in danger when choosing to meet them where they are and hope to guide them to somewhere healthy. In these cases, be careful. Ask for help yourself if you can. But on Memorial Day it serves us to remember that moving into danger to be of service can be heroic. Can be, if we are careful and aware of who we are risking our safety to help.

My youngest brother is highly capable now, compared to where he was only years ago, and that is because a) he works at it, has clear goals, and wants it b) he reaches out to me or my mom when he needs guidance, ideas, calming down and c) trusts we will help.

My mom and I rarely are too busy for him, even though we often are. And when we don't take the time to guide him out of his misery, it is always with a belief in his ability to do it himself, not pity or avoidance of him.

Memorial Day can be a day for us to be in service. As we remember and honor the fallen vets, we can reach out to a living disabled veteran, one struggling with addiction, P.T.S.D, depression, or mobility issues. This will serve us equal to, if not more than, them.

And reflect on how accessible we are. Every day, how accessible are we? How inclusive and accessible is the world around us?

Make changes, ask others to make changes.

This Memorial Day - honor and remember and give gratitude to the fallen vets, and everyone who finds ways to make being in service a lifestyle. We will all be fallen one day. Let's honor those who have fallen before us. Who have been heroes and livers of intentional inclusive lives in service to others.

And let's become a hero in service ourselves.

“We don’t grow sophisticated alone.” ~Dr. Lynette Louise (“The Brain Broad”) 

Hugs, smiles, and love!!