Autism Answer: I Haven't Met You Yet (A letter to my granddaughter)

 

                                                                                                              March 11, 2021

Dear Aislinn, 

 

Tomorrow you will be one week old and I still haven't met you. 

 

Oh, you spent some time here with me and Ian before you were born. I had the pleasure of singing to you, of feeling you shift around in mommy's womb. You were here with your dad, mom, and big sister, Clarke. My heart - my heart! - when I remember your sweet sister here calling out, "Gweema!" and letting me wrap grateful grandma arms around her itty bitty body. 

 

I love you, Aislinn. I just haven't met you yet. 

 

You've been born into a world swirling thickly with ideas, desires, needs, and beliefs that splash and clash and dance, diminish and expand, hurt and heal. (I don't only mean us grown-ups tend to argue and debate, I'm also referring to the balance of nature itself which is brilliant, bold, and assertive.)

 

Your cousins and sister were born into this same world, too. We all were. But you, Aislinn, arrived at a time when this swirling world is keeping me away. There are travel restrictions and a virus whose spread we're trying to limit. Unlike any time in my life, Aislinn, the world is working on the same problem at the same time. There are a surprising number of sides to this story little one, and I am just one grandma with a few thoughts, no big answers or fighting words, but my relationship with you begins in this moment no matter how few or big my thoughts and words are.

 

I love your cousins, I love your sister, and I love you. You are all singular and extraordinary. I crave your spirits and care more than feels manageable about your hearts and souls. All of you.

 

You are all special to me. But you, Aislinn, are newly special. A love of my life that I cannot hold in my hungry arms. They ache, Aislinn, with the lack of you. I held your sister, not long ago, for hours and hours and hours. My arms ached with her weight, with my desire to meet her needs as she slept ever-so-lightly. Do you sleep ever-so-lightly, sweet snuggle bug? My arms do not know. My arms ache to know.

 

So you and I are starting off learning each other in this new way. 

 

I do get to see you. Pictures, videos, and video chatting are not substitutes for the real thing but they are real. I can sing to you and watch you with your sister. Watch you with your mom and dad. Hear your little voice as you cry out. (Although, I have not yet heard your little voice. Do you have a loud cry? Do you demand attention from the world or simply call out to those close to you? I don't know these things. I want to know these things.) 

 

I love you too much not to learn this with you. This way of getting to know each other. And, do you know little pumpkin pie, that we are not alone? There are millions of others unable to gather or snuggle or show up. So many others who cannot lean on their usual ways to connect with each other and celebrate life. So, like us, they are figuring it out. 

 

I hope that we are all stretched to be better because of this. With you being born I have so many reasons to care about using this moment well. Not only because you and your sister and cousins are in this world and I want it to be a place where we use moments well, but also because I am trying to use this moment well and I'm noticing a few things.

 

Surprisingly, I feel myself resisting. I want to hold you and sing to you, I wanted to be there with you and your sister from the beginning, be the helper-self I know me to be for your mom and dad, so I catch myself resisting the joy of this new way. This being apart way. Partly because this new way is temporary (I will hold you and be with you, Aislinn, I just don't know when) but mostly because I know how much I love the other way and I don't want to lose that. Silly grandma! I can love both ways. And this is the way we have right now. 

 

Also, the world is sort of smaller but also sort of bigger. Because we are unable to travel and visit much, we are practicing new ways of being together. And if we practice being honest and authentic and vulnerable in these new ways, we can grow in unexpected directions. I'm sorry to tell you little love bug, but even before the travel and visits were limited people struggled to connect in meaningful ways. This is something I can't wait to discuss with you as you grow, but for now just know that we - as a world, but also you and me - have been almost forced to contend with this. To explore where we've been lacking and make changes. 

 

So, sweet snuggle bug, we are building something new together. Well, new to me I guess. You are learning this from the beginning. 

 

More reason for me to do it well. 

 

Aislinn, you matter so much to me. You and your sweet cheeks and full head of hair have my heart. Yet I am no one to you; I know that. But I will build something with you. 

 

You are singular and extraordinary to me. 

 

We will navigate this new relationship together and build something unexpected and unrivaled.

 

I love you, Aislinn.

I just haven't met you yet. 

 

Love,

Grandma 

 

 

P.S. "Haven't Met You Yet" is a song by Michael Buble, a singer your Uncle Declyn likes. I have been singing that hook in my head since you were born and, this is something I can tell you about me, I like that it has an upbeat tempo. It's a fun song. I like using it to remind myself to be happy and remember that I will meet you, it just hasn't happened yet. I love using song lyrics to feel things. Oh, and I can be annoyingly positive sometimes (ask your dad, he's comfortable saying I'm annoying sometimes. tee hee!) but mostly I'm just normal positive, not annoying. Positive.

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook)

 

Photo Credit: Obviously, not me. I haven't met her yet! This pic was taken by baby's mom, Aly. Beautiful!

 

Autism Answer: I'm Thankful My Best Friend Is (Still) Alive

 

I'm thankful for my best friend. And I'm thankful she's still alive.

 

My best friend and her husband were hospitalized and fighting for their lives this past summer. COVID-19 positive and in the ICU (one blessing, they were together) they were in pain, struggling to breathe, and having intense conversations about their possible death: What should we do for the kids before we die? Why have we not told them so many of the things they need to know? Not so much about our love for them (my friend and her husband talk openly and often with their children about their love) but about logistics and specifics and what to do with unfinished business. 

 

My friend is a nurse and until that time I hadn't really thought about the part of her job that puts herself and her family at risk for the health of others. I mean, I had sort of thought about it, but I hadn't felt about it.

 

While they were fighting to breathe I was thinking and feeling about it.

 

And after they were permitted to go home, doing better and no longer contagious but still needing oxygen machines and working at getting stronger without pushing too hard, I visited and we talked and talked about it. And about why it is worth it to her. (We also talked about fun light hearted stuff, laughed a lot, ate fun foods, and danced in her living room to our favorite playlists. After all, we believe in a holistic healing approach.)

 

First responders and health professionals are walking into danger in order to help us out of it. This we all know, but it is worth it to take time to feel it too. 

 

And to listen to them when they take a moment to tell us what we might be able to do to help them.

 

When I talk now with my friend she just wishes we would be willing to gather in small groups and wear masks when we go out. She knows it's not fun, but she and her coworkers are exhausted, forced consistently to turn people away when they're sick (there are not enough nurses and doctors, and there's not enough space in her hospital) and they are getting sick themselves, so are their loved ones. 

 

At the moment my friend's mom and sister and niece are all COVID-19 positive. They can't taste things, they're aching and sick and have a hard time moving around, but they're doing alright. No need for the hospital. It's been a couple of weeks and though they are barely better they are not worse, and that's a big thing. My friend's mom works with someone who tested positive for COVID-19 yet refused to wear a mask so it's likely that's where the illness spread from. But, of course, it could have been so many other sources. 

 

And this morning, around two in the morning, my friend got a text from her son - "sorry mom I can't make it to the house for Thanksgiving because I have a fever and I feel sick." My friend called to talk with me about it on her way to work where she offered to pull half a shift because they need nurses. They are always needing more nurses now. More people to walk into the risks in hopes that they can bring us out. 

 

She offered to do only half a shift because her husband will be home today. He's rarely home, though they don't complain about that. He was at risk of losing his work when this pandemic started but then after he had COVID-19 and didn't fully recover it was an absolute. Luckily, he found work in trucking and - though he is rarely home and making far less money - he knows to be grateful. In fact, their youngest son is still unable to find work. He was doing welding work (on pipelines, I think?) but he's been without work for over six months now and has not given up actively looking. He's had a great attitude, and that's awesome, but he still doesn't have a job. 

 

Now my friend is going to chat with her husband about keeping everyone away from their home this Thanksgiving. You see, her son is sick with COVID-19 symptoms and he lives with his brother. Who had a visit with their other brother just yesterday. Soooooo.... all the boys have been in contact with each other and though it is quite possibly just a flu or other illness, they are aware it also might be COVID-19. And my friend is uncertain whether she and her husband still have the antibodies, so she wants to be extra careful. Even though asking her kids to not come over for Thanksgiving sucks and hurts her heart and is unfair to her husband who rarely sees them. Even so, that's where she's leaning. Just in case it isn't just a flu.

 

A problem with COVID-19 is if you do contract it, experts are still unsure how to help you. If you get the flu they know what to do. You're unlikely to die from the flu if you get help on time and are relatively healthy. But COVID-19 just isn't like that. It's still leaving nurses like my friend and her colleagues feeling impotent and uncertain and, of course, exhausted. They care about their patients and they care about their families and they care about their jobs and they care about their skills in treating illness. They care. 

 

I'm so thankful for my friend. For what she does at work, for what she does for her family, and for what she does for me. I'm grateful that she shares her work, her family, her time and ideas with me. 

 

She doesn't ask for much, but she does wish we'd wear our masks and do whatever we can to slow the spread of COVID-19. Smaller gatherings, being willing to shift our traditions to accommodate this new threat, being a brave lone mask wearer, or saying no to invites when we must. She knows it won't stop us from spreading COVID-19 but she also believes it will slow the spread. 

 

She's just one nurse with one voice. But that voice almost died, has nursed her husband when he almost died, has visited her mother and sister and niece (all geared up in PPE of course) to offer support and check their vitals, is going to talk to her kids about not coming to the house for Thanksgiving because she believes it might make a difference. Oh, and she lost a childhood classmate to COVID-19 just yesterday as well. And that voice talks to me often and with thoughtful candor and grace. 

 

I love that voice and I will do anything I can to hear it and keep it alive. 

 

Including sharing that voice with you and giving you my version of her words and ideas. I hope you choose to hear it and help me keep it alive as well. 

 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook)

 

P.S. : Thank you for sharing this space with me, friends. And feel free to invite as many others as you want, mask wearers and non-mask wearers alike! It is a neat thing that we can gather here and discuss our ideas without risk of spreading COVID! Of course, spreading ideas has it's own risks and dangers. But, you know, that's an idea worth gathering here to talk about.

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.

____________________

Autism Answers with Tsara Shelton (Facebook) 

Image: Me laying in bed while sick and sleepy

Autism Answer: Mental Health During this Pandemic – Three Indoor Tips for Growing Healthy from Inside to Out

May is Mental Health Awareness month. I encourage everyone to seek information that can stymie stigma and encourage personal mental health, always. But during an “awareness” month there tends to be a bit more, well, awareness! Hence May offers a timely opportunity and easier access to information.

I am not a mental health expert, but my mom (Dr. LynetteLouise, aka The Brain Broad) is. 

Firstly, I encourage you to read her books, watch her videos, listen to her music, and explore her articles, particularly if you or someone in your family has special needs or a disability. 

Secondly, though I am not an expert I am both a human during a challenging time, and a sister to people with autism and other mental health challenges. So though I am not qualified to counsel I do have pertinent experiences and insights to offer. And as a human during this challenging time and as a sister to people with mental health challenges I am compelled to share my tips in the hopes that it will help you, which in turn will help me and my family. After all, we all live together in this same world. Even when we see it and experience it so very differently.

I confess, I love chatting about tricks for personal mental health and happiness. I could (and will, given a chance!) discuss with you for hours various thoughts and habits and stories that shine new light, offer new perspectives, and plant nourishing healthy beliefs. But we are not together and cannot discuss.

So, here are three tips I can share easily. Though I do wish you were here to chat about it with me! We could discuss why I believe helping ourselves grow healthy on the inside will help our world when we go back to the outside. Anyway, three tips: 

1)   Bingeing on shows, books, songs: Right off the bat, I’m going to cheat. My mom wrote a brilliant and influential article published on BrainSpeak.com titled: Bingeing For Self-Improvement – I do hope you read it. In the article, she uses her expertise as an international expert as well as a mom. As her daughter, I grew up in a home that intuitively took seriously the art and stories we put in our brains. We chose our movies, shows, books, songs, and images with purpose and self-reflection. In such a diverse home as ours (my mom had eight kids; six were adopted, five had various cognitive challenges, four were on the autism spectrum, and all of us had unique personalities) it quickly became clear what was/is healthy for the brain of one person was not necessarily healthy for the brain of another. And, always, the individual doing the watching/listening has a responsibility to notice and choose how they receive what they put in and what they will allow. CONCLUSION: Choose what you watch, read, listen to, binge on always with purpose and self-reflection. But particularly now, as anxiety is prevalent. Although anxiety is not your friend you can use it in a healthy way. With worries top of mind, notice them. Explore them. Be purposeful and careful, do not wrap up and hide away because of them but, instead, see what it is they are telling you about you. Then watch, read, or listen to something that takes you in a healthy direction. You don’t

want to seek validation for your anxiety (don’t worry, you’ll find it anyway) but rather actions you can take to confront it, or even simply let it go.

2)      Intimacy with yourself. This is an excellent time to explore your own intimate self. Yes, I am hinting at sexuality and masturbation, but it can and should be part of a more all-encompassing intimacy. May is also national masturbation month. Orgasms are a healthy cost-free way of relieving stress, but sex can also be fraught with mental health barricades. Traumas, disabilities, worries, body image issues, there are so many vulnerabilities that we can’t ignore during sexual encounters. If you are at home with a partner, or alone, these issues can be explored. Be intimate, be purposeful, be inclusive, be curious, be gentle and patient. If you are only alone, use this time to truly know what pleasures you and why. Pay attention to your fantasies – do not judge them! – but certainly, ask yourself questions about them. Pay attention to what types of touch you like and don’t like. Wonder why. Practice asking for it. If you are with a partner, this can be done together I hope. Some of us, sadly, are alone with a cruel or abusive partner. (RAINN and other organizations are set up to offer help in these cases.) But even more of us that are alone with a partner could really spark healthy and important conversations and connections with careful considerate and intimate explorations. CONCLUSION: Touch yourself, touch your partner, and have the vulnerable naked conversations about sex and pleasure that perhaps you have avoided or never even considered. And if you are comfortable and able, share what you are learning with others. (The site SexualDiversity.org would love your stories!) People with disabilities are dangerously underrepresented in sexual literature and learnings, so I doubly encourage you to be brave and share. If you can. Firstly, work on yourself. ;D

3)      Trauma and Healing – this pandemic is causing trauma for many. And for those of us who are already trauma survivors it can be triggering as well. Also, many of our go-to healing activities have been taken off the table as options. For example, I go dancing. One of the things I do when I need to center and find my inner healthy connected-to-the-universe and valuable self, is go dancing. But all the clubs and dive bars are closed, rightfully so. Dancing at home is lovely and helps, but I don’t have a sound system that pulses the music into me the way it does at a bar. What I’ve done is switch it up a bit. I still use music and dancing, but instead of crawling inside the music and setting my body free, I'm surrounding myself with songs that bring me back in time and I am reliving my memories with purpose. Coloring them in with intention and love of self. This has helped me. I know you can do something similar. Reaching out to our support networks and healing activities may look different for now, but it is worth doing. Finding the different that helps you. Help your happiness and healing by finding new ways to balance your brain; using old tools or discovering completely untried ones. Now is a wonderful time to try things you put on a back burner for later, or even things you thought were silly. Perhaps you can make them not silly. Do them in a way that works for you. Yoga, guided meditation, dancing, singing, building, climbing trees. CONCLUSION: We can take care of our own mental health during this particularly challenging time even if our common helpers are not available to us or are only available in a different way. We also can still reach out to our networks of support. Our networks are also in need of support, and offering it is also healthy. Whether we offer it in the form of asking for them to be there for us, or in the form of being there for them, it is still a mutually beneficial relationship. Even if it must be remote, we can still be connected. 

These three tips are helping me during this strange time in our world. As I said, I am not an expert in mental health. At least, not in your mental health. But I am rather good at knowing how to help me and my family.

And since we are all one family right now, navigating this world at a unique and challenging time, I can’t help but want to share with you and to presume one or two things I have to offer will be helpful.

If we share our ideas and tips, we can build ourselves healthy from the inside out so that when we do go back more convincingly into the outside world, we can step out of our inside with a stronger mindset and healthy ideas.

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)