Author: snort262

I am a wife, mom, long distance runner and fierce autism advocate. My background is in education. Currently, I am a paraprofessional at a Title One school, a fighter for kindness and social justice, and a fervent animal lover.

Treating autism is not witchcraft

Dear Ravi,

Newsflash, treating autism is not witchcraft and your phone is always listening to you. Last night Daddy was editing my book. He had a question about Leucovorin and when it had been given to you during your chemo treatments. We both remembered it was a rescue drug but could not remember after which type of chemo it was given. Anyway, he went off to a concert, and I went to bed. I rolled out of bed around 4am as sleep was eluding me and you and Mercury were ever present in my mind. I grabbed my phone to check the temperature. Instead of telling me the forecast it switched to LinkedIn and showed me the key word Leucovorin. Hmmm, sus. Nevertheless, I clicked on the link and promptly fell down a rabbit hole.

Let me try to explain, Leucovorin, also known as folinic acid, is a form of folate, or Vitamin B9. It is used primarily to counteract the toxic effects of certain chemotherapy drugs, including Methotrexate. It is essential for DNA synthesis, red cell production and overall cellular function. Methotrexate can inhabit folate metabolism. Okay, so far this sounds correct, but what on earth is the tie-in to autism? It seems, that in very rare cases, some people are born with CFD, or cerebral folate deficiency. This can lead to autistic like behaviors. The FDA is now suggesting that Leucovorin can be used to help mitigate some autistic behaviors. Hmmm, once again, sus. Ravi, you were seen by some of the best specialists in the Midwest. You underwent scores of tests, blood draws, MRIs, PET scans, etc., both for your autism and your osteosarcoma. Never once did we hear of Leucovorin until your first round of methotrexate in December of 2022. Generally, the methotrexate was given over 4 hours. As soon as the IV bag was empty the nurses would run another IV bag of Leucovorin. Then they would begin massively pushing IVs of saline to push as many of the toxins out of your system as possible. You underwent the Methotrexate protocol from December 2022 until April 2023, when your kidneys quit and you gained 35 pounds in water weight overnight. It was a horrific experience. Never once did Leucovorin make you less autistic, more verbal, etc. Never once did anyone on your team say that the Leucovorin could help mitigate his autistic behaviors. Never once. Turns out that it wasn’t so great for counteracting Methotrexate either. That was your last dose of Methotrexate forever.

I dug further down this bizarre rabbit hole. Who was suggesting the use of Leucovorin in autism? At first blush, it appeared that this was coming from the FDA. That was strange, so I dug deeper. Who is controlling the FDA currently? Trump and Kennedy. Of course! The same monsters who told pregnant moms that taking Tylenol would cause their babies to become autistic. The same monster who suggested using Ivermectin and bleach to combat Covid. Now the pieces were coming together. It was all another gigantic hoax, led make desperate parents of newly diagnosed autistic children believe that they were at fault for their child’s neurological differences and that this would be the magic bullet. Just another hoax, just another heartache for any parent who fell for it.

Ravi, my love, you were perfect as you were. I wanted to make life easier for you, but I never wanted to take away your autism, because then you would not be Ravi anymore. If someone took away my autism, I would not be Harriet anymore. Autism is hardwired into us. It effects how we see the world and react to it. It allows us to feel both great joy and great sorrow. I have been autistic for nearly 55 years. If that were to be taken away from me, I would not know myself. Ravi, if someone were to take autism away from you, I don’t know that I would recognize you, and that makes me very sad.

So, my dear, treating autism is not witchcraft and our phones are always listening to us. Had it not been for Daddy’s question last night, I doubt that I would have gone down this very peculiar rabbit hole. Recently, I was at a disabilities conference called Closing the Gap. I met many likeminded moms and tons of teachers and SLPs. We talked about inclusion, AACs, modification of the environment, and so many other things. Not once did I hear anything about Leucovorin, and this was a conference that brought together some of the brightest minds from around the country. We were not discussing witchcraft or herbal remedies. We were talking about closing the gap between those with who are considered “normal” and those who have differing abilities. We were not talking about magic bullets or an instant cure. Since January 20, everything that has come out of the Oval Office is a hoax or a scam. The Oval Office is trying to run the FDA and the CDC. Many of the best doctors and researchers have resigned, rather than do something they view as unethical and harmful.

Ravi, I miss you more than words can express. I miss you sheer joy at life and your flappy hands. I miss your love for Carboni’s pizza. I miss your goofy grin and your deep belly laugh. I would not change you for the world, but I would take away the epilepsy and the cancer. Autism fads will come and go. This too shall slink into the dark abyss of time. Someday, hopefully soon, someone new, kind, thoughtful, and caring will enter the Oval Office, and the FDA and CDC can get back to doing their critical work. For now, we will speak out as best that we can for those whom we love. Forever and always, Mom.

All Souls Day

Dear Ravi,

We celebrated you and all the saints and souls who have gone before you at church on Sunday evening. Joy had hung up pictures of all our parishioners and loved ones around the walls of the church. Your picture was on the right hand side of the church, or the eagle side as we say in TEC, near where I always sit. You were a few people up from my dear friend from EFM, Mary Fred. She also was treated for cancer at Mayo, which prolonged her life by two years, and then slipped away from us in hospice during the Covid shutdown. I imagine you and she are having a marvelous time in heaven. She is an amazing mom and advocate, and just a lot of fun.

The opening hymn on Sunday was I Sing a Song of the Saints of God. This was also the processional at your funeral. It has always been one of my favorite hymns, but hearing it now brings me to my knees. All Saints Day and All Souls Day are such a thin place. The veil between the living and the dead is feather thin on those days and flutters, letting us have peeks at each other. In my heart of hearts, I know that you are just on the other side of the veil, waiting for Daddy and me. After the service he and I went down to the chapel to visit you. Joy had lit a candle as a memorial for a baby who was born sleeping. Can you and Mary Fred keep an eye out for the baby? She was loved and wanted but slipped away in the womb. St Clements is planting on oak tree on our parish green for mothers who have lost babies and babies who were born sleeping. They will rest safely in the arms of this tree, instead of the arms of their mothers who grieve them.

I was at the church on Monday as part of the Gather Group. We were interviewing candidates interested in leading our neurodiverse worship services and teaching other churches how to make the neurodiverse feel welcome and church settings. This is a 5-year project funded by the Lily Foundation. Before the interviews began I slipped into the church. All the pictures were still hanging on the walls, keeping watch. Gently, I took your picture down and slid it into my interview folder so you could be with me during the decision process. In each candidate we met I wondered if they would pass the Ravi test. This was the test I gave to all of your PCAs. If they came to the house trying to impress me but paid little attention to you, we immediately wrote them off. If they came in the house and you instantly took a shine to them, I knew that they were a good person and could be trusted. Ravi, you had an excellent sense of people and their vibrations, and you never once led me wrong. Some of these candidates I could see you taking an instant like to them. Several of them were autistic and I promptly felt comfortable with them. Others were well intentioned but did not seem to have the calling for this particular ministry. After nearly 5 hours of talking to people our panel of interviewers went home. We were all exhausted. Each candidate brought their own wave of nervous anticipation and anxiety into the room, and it was hard not to let it rub off on us. We reconvene this evening, talk to two more candidates and then will do some serious reflection over a meal. Candidates in whom we are interested will be called back for another interview and a chance to meet other members of the church, particularly the ones they will be serving. May God be with us as we discern who or whom will be taking on this new ministry.

Ravi, it is 5 am and I am writing to you. I never do seem able to keep normal work hours. I can wake up from a sound sleep with an idea in my head and I have to write to you to get it out. I have been talking to a few publishers for your book. I have decided not to go the route of self publishing. It seems to be a very expensive vanity project and not how I want to project your story. I am putting together a list of potential agents and submitting them to Abbey, our editor. This will be a long process but hopefully a fruitful one. If nothing else, we always have the blog and our band of faithful followers, for whom I am ever grateful.

It’s still dark outside, Ravi. I fed the animals and now they are asleep around me. When it gets light outside, I will take the dogs for a walk. Due to back problems, I am not running much these days, but the dogs and I get in at least 5 miles a day of walking. We had a good walk before the interview yesterday, as I knew that I had to get my wiggles out. Fortunately, if I have notes to take and a few good fidgets on hand, I can generally stay seated and focused. You would be proud of me; I even tried to sit like a neurotypical person! It was hard! Chairs are overrated, but interviewees get nervous if I start pacing the floor, which is my favorite way to think.

I miss our walks, Ravi. I miss your laugh and your smile. I knew that you are with Mary Fred and a host of other souls, just on the other side of the veil, but I still miss you. One day, we will all be together again. No cancer, no pain, no fear. Can you pray for your Uncle Rob? You and God know why. He is a very good human and much loved by his family. Go in peace Ravi, to love and serve the Lord. Love, Mom.

All There Is

Dear Ravi,

Our good friend Roberta came over last night with the candle she lit for you in Durham Cathedral, while on her trip to England and Scotland. Apparently, you have been quite the traveler! She lit the candle for you in Durham and said prayers for you. When the candle had burned down, she scooped it up and put it in her coat pocket. You went on wonderful walks all over England and Scotland. You had the best tour guide ever! It probably is a lot cooler there than when you were hanging out with Alissa in Hawaii, but you had a nice warm pocket to ride around in.

After Robert left, I got out your cardinal candle holder that Laurie gave me. I put your candle and a fresh one inside and lit the flame. For a while, I just held space for you. Later, I began listing to an Anderson Cooper podcast called All There Is that had been recommended to me. I generally do not like podcasts as I prefer to get my information via reading plain text. This, however, was different. Anderson Cooper is easy to listen to. He interviews various people on grief as he tries to figure out his own losses and his place in the world. Two of the people he interviewed were President Joe Biden and Stephen Colbert. I was very eager to hear their particular takes on grief. Grief is savage and feral but cannot be denied. Colbert sees it as a tiger. He did not want a tiger, but the tiger chose him. Grief/Tigers can do extraordinary amounts of damage, but “Damn it, it’s my tiger.” Grief cannot be stuffed away, but must be lived with, shared, talked about and walked beside. I will definitely listen to this podcast again, and other ones in the series. It is my way of making space for both you and for my grief of you. Eventually, the candle burned down, and I was just left with my memories. I remember the good times and the hard times. I remember how incredibly brave and strong you were. I remember the day you flew free. If I could go back in time with you, I would choose the year you were 19. Your seizures were under control. Cancer was nowhere on our radar. You had Sam and you were learning to truly communicate. Even though parts of that time were during Covid, you were surrounded by family and friends that loved you and wanted only the best for you. I hold onto that particular time frame in my mind. You were so alive, well, thriving. I felt that there was nothing that you could not do. You voted in a democratic president and we both whooped for joy when he won. All was good.

This Sunday is All Saints Day. We will have a requiem service at church that afternoon. Beautiful music will be played and memories shared. The pictures of all the saints who have passed on from St Clement’s will be hung on the walls. It may seem odd to be looking forward to such a somber service, but I truly am eagerly anticipating you. Ravi, you were so loved, and your memory lives on strong. As long as I draw breath, you will live in my heart forever. I rejoice in the thought of you tramping all over Scotland with Roberta. You always were peripatetic, not one to stay home. I sense you most when I am outside, when the sun dapples through the trees, when I certain chords on the church organ that reverberate through me. Fly free my son. Fly free and experience joy. I am cheering you on, for every and always.

Love,
Mom

October 19, 2024

Dear Ravi,

This was the date that St Clement’s prayed and sang you into heaven. It was a beautiful and heart-breaking service. I go back and forth about which was the worst day of my life. Was it the day you died in my arms, or the day we laid you to rest? I don’t know.

I went to church this morning hoping to feel you. For some reason my hands and feet were freezing. I felt cold all over. Gradually, the sun crept into the church, and as Elizabeth preached, I found myself covered in sunshine. It did not help that much with the cold, but it did make me feel better. So did the prayers, songs, and breaking of the bread. 1782 Ashland Avenue is my home, but the parish, and the chapel where you reside is my home away from home. It is where I seek God, I search for you, where I am joined in fellowship by those I care for deeply.

I went to the chapel after church but could not stay long to talk to you. It seems that there was a meeting about to happen there. People were straggling in, talking to each other, looking at the phones, and I could not really sense you. I put my hand on the door that leads to your niche and offered you a brief blessing. Then, I hurried out until the sunshine.

Yesterday, your daddy and I joined nearly 8 million people across the country in a No Kings March and Rally. It was beautiful, peaceful, and life affirming. Though I am exhausted today, I am very happy that I went. There were speeches, chants, signs, songs, and costumes galore. We listened to the songs, speeches and prayers before marching the streets with thousands of likeminded people. Democracy raised her voice yesterday, Ravi, and was heard. You voted for democracy, and you did not vote in vain. The pendulum will swing the other direction, I just don’t know when. The shutdown drags on, and millions of Americans are worried about health insurance, jobs, feeding their families, the list goes on. But yesterday was a day of hope.

Daddy was hoping to go soaring today, but the winds are too gusty. Instead, we will walk the dogs and remember you. Your two remembrance trees in the backyard are thriving. We put bunny barriers around the trunks to protect them from the ever-hungry rabbits. I will not have bunnies eating your trees! These trees are destined to grow and blossom in your memory. We will protect them at all costs.

My dear son, I miss you deeply. I sensed you yesterday morning at sunrise as clouds were scudding across the newly awakened sky. Your name is on my lips when I arise and when I take my rest. Please offer up a prayer for your sibling, Mercury, I fear that they are suffering economic hardship and potential danger. I want them to know that they can always return home. Our door is open. It may take a miracle to bring Mercury home, but I am always on the lookout for miracles. I also believe that miracles take faith and hard work. In your memory, my love, I continue to work and pray. Ravi, you are in my heart forever. Love, Mom.

12 months

Dear Ravi,

“My words fly up, my thoughts remain below. Words without thoughts to heaven ne’er shall go.” Macbeth. I have no idea what to write, so I will invite the Holy to prompt me.

Ravi, it has been a beautiful yet heartbreaking weekend. I have felt your presence in all who have reached out to us. The people who sent cards or gifts, those who prayed for you and lit candles. Those who offered the altar flowers in your memory. My son, you have not been forgotten, and we are not alone. But, in the midst of this beauty, I am heartbroken. I miss you. I miss your infectious grin and your inane cackle when you found something to be particularly funny or absurd. I miss your hand in mine. I miss talking to you with Sam. I miss our treks to Taco Bell and Target. I have been able to get carry out at Taco Bell, but I have not been able to return to Target. That was the last outing that we took with you. You were so weak. We put you in your wheelchair and pushed you to the car. We drove you to Target and I ran inside to get a Caroline Cart. You loved those carts. We spent half an hour just roaming up and down the aisles, like we always did. This made you happy. That was the last time you left the house.

As I mentioned in an earlier epistle, your daddy and I have purchased two trees to plant in your honor. They arrive tomorrow and will make their new home in our backyard. One is a north star cherry. The other is a prairie fire crabapple. They will provide shade to the house and solace to our hearts.

After church today your daddy and I went to visit you in the chapel. Daddy said he could imagine your atoms and molecules running all over the universe. I reminded him that energy is neither created nor destroyed. You have simply moved on to a different form that we cannot see. On the day of your burial, Joy reminded us that Ravi is not here. No, you are not there in that chapel, even if that is where I continually return to visit you. You are running wild and free in the universe. Nothing can slow you down or harm you. Cancer, epilepsy, fear pain, are gone. You, my love, are free.

To all who are reading this blog, I thank you from the bottom of my heart for reaching out this weekend. We can feel your love. I wish I could spread this love to all the corners of the earth and truly bring forth the Kingdom of God. It is a blustery day outside, but I have a happy cat purring at my feet. The dogs are romping around in the wind, except for Raya who is snuggled up with Robert. And all will be well, and all manner of things will be well. Be good humans. Ravi, I love you forever and always. Mom.

The Cardinal From Ukraine

Dear Ravi,

We have a bit of a mystery on our hands. As you know, on Saturday your daddy and I picked out two trees for you, and I planted lots of crocus bulbs to come up next spring. The mystery came in the mail. It was a beautiful cardinal sun catcher made by an artist in Ukraine. There was a little note from the artist, but no sign of who had ordered the cardinal. I asked your cousin Paul, and he said that it was not him. I put out a query on social media, and while lots of people said that this was a very nice gesture, no one owned up to it. Daddy and I are delighted with the sun catcher but would love to know who sent it so we can send them a thank you card. Puzzling. I am certain that the sun catcher was sent to commemorate the first anniversary of your passing. Anyway, the happily little cardinal is perched on my window beneath my reading chair and seems to feel right at home.

Today was a fairly typical Monday, except for one aspect. I got up early, walked Raya, ran Jack Jack and Gloria, and took a walk with your dad. We met with John and Jenn, our osteosarcoma peers, and later I met with Kathy. The only thing different about today is I finally submitted my author bio to Abbey, my editor! I had gotten completely stuck on writing a query to publishers and the bio. Writing a query is basically trying to sell yourself, something that makes me very uncomfortable. Anyway, I sent that in a week or so ago, Abbey made some changes and copy edited it and now it looks pretty good! An author bio should only be about 100 words. It gives a brief description of the writer, in the 3rd person, and is supposed to pique the curiosity of the reader. I sent this to Abbey a couple of hours ago. To the best of my knowledge, your book is done! Congratulations, Ravi! The next job is to find a publisher who is interested in taking my project on.

So, my son, the week of the anniversary of your passing is here. We have been dreading it. I vacillate between feeling okay, to feeling numb, to not being okay at all. I guess this is all parr for the course. On Friday I am going for a walk with Pamela. On Saturday, we want to spend time with Dan and Robin, possibly cooking and watching a favorite show on Netflix. They were the first to arrive on the morning after you passed and stayed by our side during that long, terrible day. On Sunday I will teach Sunday School to 6 very energetic little girls. The flowers on the altar are being given in memory of you. Afterwards, I will go down to the chapel to see you. On Monday, your trees will arrive and be planted. Ravi, I miss you more than words can say, but I know you are flying free and strong. I hope cardinals will come to our trees and eat all the berries. I hope you are happy. I wish I could hug you just one more time. Love you forever, Mom.

Two Trees

Dear Ravi,

Does time in heaven look and feel the same way as time on earth? I seriously doubt it. Scripture says that a day in heaven is like a thousand years. I believe that God operates outside of the confines of time. It has been nearly a year since you left us. Your daddy and I want to do something to commemorate your passing and decided that planting a tree in the backyard felt like the right thing to do. Roberta told us that Gerten’s was a great place to find a tree, so we spent several evenings perusing their website. Our choices came down to two trees. One was a north star cherry; the other was a flowering crab apple. Do you remember the crab apple we had in the backyard when you were little? I miss that tree. Yesterday, we went to Gerten’s and wandered all around. I had no idea that the nursery was so big. There were literally acres of trees, plants, vines, herbs, etc. It smelled heavenly. A nice lady named Emma helped us find both the crab apple and cherry trees. The crab apple tree that caught my eye was called prairie fire and the pictures showed beautiful vibrant blossoms. The cherry tree was said to produce pie cherries. Both are pollinator friendly and attract birds. We could not make up our minds, so we decided to purchase both! I picked out a crab apple which spoke to me and daddy picked out a cherry tree which spoke to him. We also bought a bag of fertilizer that guarantees the life of the tree for 5 years and encourages healthy root growth. For a fee, Gerten’s will also deliver and plant the trees that one purchases. We decided to do this as well. I am not certain I can dig deep enough to make the entire root bulb happy, and I want to give these trees the best possible shot at life that I can give. The trees will be delivered and planted on Monday October 13, 2 days after the anniversary of your passing.

Before your daddy and I went to the nursery Laurie came over and we planted 50 crocus bulbs in a spiral shape in the front yard. Daddy dug two eight-inch-deep trenches in the side yard, and I planted more crocus, some hyacinth bulbs, and some tulips. Now I will have something pretty to look at when spring arrives. The bulbs should come up before the grass does. It was 87 F in the shade yesterday, so I worked in fits and starts. I hauled lots of wood chips from the pile in the driveway over where I had planted the bulbs and spread it all around. The yard still looks like a bit of a jungle, but little by little I am making progress.

After Daddy and I had purchased your trees we were wandering out of the nursery. An orange monarch swooped by our heads. I am certain that it was you checking in and approving of the trees we will plant in your honor.

Ravi, we miss you more than words can express. I have been dreading this month and this coming week. We are grateful for the friends who walk this path with us. Tomorrow, there is an outdoor blessing of the animals at St. Clement’s. I am taking Jack Jack. He is our only truly sociable dog. Gloria would tell Joy how to run the service and herd all the other pets into a tight pack. Raya would simply faint from sheer terror. So, that leaves Jack Jack who will do anything for a good belly rub. I hope that you will stop by the service. It will be the type of controlled chaos that you love. We are excited for the trees to arrive in 9 days. We will think of you every time we look at them. Love you to the moon and back. Mom

No rapture, no epidemic

Good morning from St Paul. We are pleased to announce that the rapture did not happen. We are also pleased to announce that no one is eating the pets. Remember that? “They are eating the dogs. They are eating the cats. They are eating the pets.” That did not age very well, did it? Currently, I have 3 dogs at my feet, a cat on the back of my chair and a hedgehog happily running on her wheel. No one is in any danger of being consumed. So, let’s go over what is not going on. Tylenol does not cause autism, nor do vaccines. The idea of the rapture is made up by people who want you to be scared of your own shadow and a wrathful deity. Nope, I don’t believe it. What else don’t I believe? I don’t believe that autism is a pandemic.

When Ravi was diagnosed in 2002, the current belief was that 1 child out of 181 children would be diagnosed autistic. Over the course of his life, these numbers fell. When he passed, last fall, I believe that the numbers were 1 in 36. So, before you start clutching your pearls, let’s dive into this. In 2004 autism was seen as something that only affected little boys. You know the stereotype, the “little professors” the ones who lined their toys up in a row, the ones who knew the name of every dinosaur that ever walked this earth. Funny, Ravi did not do any of those things. True, he was non speaking and until he got glasses had terrible eye contact. (By the way, eye contact is seriously over rated.) A lot of the time, it seemed that he lived in his own little world. Gradually, over the course of his life he world expanded greatly and he lived and loved deeply. But, he could not have cared less about dinosaurs or the time tables of trains in the EU. The “professionals” also told us that autism was very rare in females and that clearly Ravi was the only one in the family who was affected.

Ravi was diagnosed after an 11 month wait. During that time I called, wrote, begged any doctor or therapist who would listen to please take a look at my son. Again and again I was told that I was just an overly anxious first time mom and that some delays were “normal” with preemies and boys just generally talked later than girls. The first break through was when some teachers from St Paul Schools came to assess Ravi in his home environment. He completely tuned them out and 10 minutes later they told me that he was on the spectrum, and we could start Early Childhood Special Education immediately. Validation! He started school the next week and loved it. 11 months later he was seen by a psychologist at Gillette Children’s who also diagnosed him as on the spectrum. There were no levels of autism then or talk of higher or lower support needs. Basically, she assessed him, gave us a write up of her observations, said he was clearly autistic, asked if he liked puppets (?) and sent us on our merry way. She did not suggest PT, OT, or speech. I had to dig for those services on my own.

Fast forward to 8 years ago. At the suggestion of a good friend, who is also autistic, I got myself evaluated. I too, discovered that I was on the spectrum. In a way, it was a relief. For 46 years I had felt like an alien dumped on planet Earth without a how-to manual. I always felt that there must have been some sort of class or seminar that everyone else took on how to be a human being, and a female, that I had just missed. I don’t pick up on social nuances. I don’t read faces well at all. I have terrible facial blindness, meaning that even if I know you well and bump into you someplace new or unexpected, I won’t recognize you. I can recognize people by the sound of their voice or their gait, but not their faces. Faces to me are a mystery. At this point, I am told I make decent eye contact. Fun fact, I am actually looking at your ear or your eyebrows. Eyes and expressions confuse me. I can either look you in the eye, or I can avert my eyes and truly listen to you. For the life of me, I can’t really do both. Two weeks after I was diagnosed, Mercury, age 14 was diagnosed autistic. Their autism manifests in high anxiety, perfectionism, a huge startle reflex, depression and anxiety. Both of us flew under the radar for years because we did well in school, were voracious readers, had huge vocabularies at a very young age and were not hyperactive or fixated on one particular subject. We both would do deep dives into things that interested us but quickly realized that the rest of the female pack was not interested in the last tsar of Russia, 6 wives of King Henry VIII or different kinds of sharks!

Fast forward to 2025. My friends who have babies tell me that pediatricians now begin autism screening at the 6 month checkup. No one has to ask for an assessment, they just happen. No one tells a mother of a little girl that autism doesn’t happen to females. Hello, Temple Grandin? For better or worse, there is also social media, which did not exist when my children were babies. There are autism moms and autism groups. There are people to bounce ideas off of if you are worried about your child’s development. There are online autism screening tests just for women. Soon after a friend recommended that I get an assessment I googled Autism in women. Pay dirt! I clicked nearly all of the boxes. For the first time in my life, all of my strange little quirks and mannerisms made sense. I wasn’t a bad person; I just saw the world from a different angle. It was a blessed relief.

So, that brings us to today. Voices in DC are screaming about autism, Tylenol, and vaccines. Using Tylenol during pregnancy will not cause autism. Autism was first diagnosed in 1911. Tylenol came on the market in 1955. Since that time, it is the only medicine a doctor will recommend to a pregnant woman. If a woman is pregnant and develops a fever, particularly in the first trimester, the fetus is at grave risk. Bringing the fever down will make mom feel better and the fetus is protected as well. Vaccines do not cause autism. They allow our children to grow up to be healthy adults without having to suffer through measles, mumps, rubella, chicken pox, polio, etc. All of these illnesses can be fatal, and even if the child lives, they will be miserable for weeks. Who wouldn’t want to spare their baby from that? The rates of autism are not “sky rocketing”. Assessments are getting better. Science is discovering that not just males, but females and particularly non-binary persons can be affected. This is not a pandemic. Pandemics are spread through germs. Autism is not spread. It cannot be caught. It cannot be cured because it does not need a cure. Autistics are not sick. They see the world through a different lens. Acceptance, accommodations, an equal playing field, better supports for those who age out of the system at 18, yes, all of these things are useful and highly necessary.

So, as I said in my last blog, let’s take a deep collective breath. Let’s stop clutching our pearls. The voices coming out of DC are just hot air. Kennedy does not even have a medical license. Why are we listening to a man who claims that he has a worm in his brain and a heroin addiction? The rapture did not happen. No one is going to eat your pets. Autism is a not an epidemic. This is not helpful. What would be helpful is to help those who have aged out of the system but cannot gain employment or acceptance. What would be helpful is knowing that all of our autistic brothers, sisters, and those who are non-binary are loved, accepted, challenged and allowed to feel that they have a place in society and that they have a voice. Rant over. Go touch grass, drink some cool water, walk your dog, get in touch with nature. I can’t promise that it will all be okay, but I can promise you and promise Ravi that I will never stop fighting anything autism related. Be good humans. Peace, Harriet.

It’s all about sex

So, today we are expected to believe that taking Tylenol during pregnancy causes autism. Really? Autism has been around since Noah lined his animals up two by two, probably by height and in alphabetical order as well, and put them on his ark. Autism has always existed. Tylenol entered the market in 1955. The use of Tylenol by pregnant women has remained about the same for the last 60 years. Have some women taken it? Sure, if they were battling a high fever and were truly miserable. Lots of women did not take it. I did not take anything but a multi-vitamin with folic acid while I was pregnant. Funny thing, both of my kids turned out to be autistic. I turned out to be autistic and so did Robert. When our mothers were expecting I know for a fact that they drank wine, ate tuna, and consumed brie cheese. My mom was a former smoker. Neither Robert nor I were harmed, though I would not recommend that pregnant women do these things. I firmly believe that autism is there in utero. I was autistic before I was born. Same for the rest of my family and anyone else who is on the spectrum. Autism does not need a cure because it is not an illness. It is simply another way of being, another way of seeing the world and interacting with it.

Vaccines do not cause autism. Vaccines save us from deadly diseases. I am an autism mom, and I vaccinate. I most certainly did not want to watch my children suffer or die from measles, mumps, rubella, or whooping cough. Because most parents took the vaccine schedules very seriously, we had a high herd immunity, protecting those who could not or would not get the shots for their children. Are their children who cannot get their immunizations? Yes definitely, which makes it of paramount importance that the rest of us make certain that our children do get their shots on time. When we vaccinate, we protect not only ourselves, but others in the world who may be immune compromised and are vulnerable. After a person goes through cancer treatments, they often have to retake their childhood vaccines again because they have been wiped out and have no immunity. While they are undergoing treatment it is up to the rest of us to protect them and keep them disease free.

Andrew Wakefield did terrible harm in the 1990s when he said that the MMR vaccine caused autism. He faked his data and later lost his medical license. But, he set the scene. Mothers were encouraged to believe that they “caused” their child’s autism when they were merely keeping their children safe and allowing them the chance to live to adulthood. Kennedy is also doing terrific harm. He is not a medical professional but is telling other doctors what to do and how to think. Autism is not an epidemic. You can’t spread it or catch it. The reason we see more cases of autism is the medical community has gotten much better at identifying it. When my offspring were babies there were not screening tests for autism at standard checkups. I knew from early on that something was very different about Ravi but had to yell and scream and stomp my feet to even get our pediatrician to refer us to someone who might help. Thankfully, he retired a few months later and we never missed him. My friends who currently have babies say that doctors start screening babies for autism at their 6-month checkup. If a child presents with red flags, they can get help before they even turn one. Intervention gives these children a chance at a happier, fuller life. This is not to say that early intervention is the only key to success, autistic individuals need support and accommodations throughout their lives, but that is a blog for another day.

So, if Tylenol and vaccines do not cause autism, what does? Sex! Autism can only happen if parents have sex. If Robert and I had never had sex, we would not have had autistic children. As it was, we very happily had sex and very happily produced two quirky, wonderful kids. We have no regrets.

I suggest that the world take a collective deep breath. Don’t believe everything coming out of Washington because it changes from day to day and becomes even more outrageous. Stop pointing fingers and digging up old studies that have already been debunked. Smile at your neighbor. Hold open the door for a stranger. Seek and work for peace. Ravi was a peace-loving young person. He would not understand the hate and vitriol that has grasped our nation. I will never find a cure for osteosarcoma, but autism advocacy is a hill I will die upon. There is no need for a cure because autism is not a disease. There is no need to make mothers feel guilty for taking a Tylenol while they were pregnant. There is a definite need to get rid of Kennedy and get an actual board-certified physician to take his place. 14 years of heroin use has done him no favors. There is not one cause of autism, there may be thousands. Someone once asked me if I could wave a magic wand, would I get rid of Ravi’s autism. The answer is a hard no. If I got rid of Ravi’s autism, I would also get rid of Ravi’s core, his very soul. I would have done anything to give him relief from epilepsy, but I would never have changed who he fundamentally was as a person. That would be like playing God. I am not a deity, just a parent fighting very hard for more acceptance and accommodations for those who are non neuro typical.

To say the least, the news of the day has upset me. I can’t control what comes out of Washington, but I can control what I believe is true. Autism can be hell hard, but it also can be beautiful. Ravi lived his life unapologetically. I loved him and Mercury with my entire heart. I would do anything to have them back in our lives. For them, for all of us in this autistic community, keep fighting to make the playing field equal and autism accepting. Ravi will be proud of you. Peace, be good humans.

Brave Like Gabe

Dear Ravi,

Yesterday, I ran another 5km for you, and for a very brave lady named Gabe. Like you, she fought cancer bravely. She was an elite runner and ran for the University of Minnesota. In 2018 she set up the Brave Like Gabe 5km to promote exercise in the life of cancer patients and to raise funds for better outcomes for rare cancers, including osteosarcoma. Sadly, she passed away in 2019, but her race and legacy live on.

There was quite the party going when your daddy and I arrived at Como Park. Tents and balloons, streamers, signs one could make in honor of their loved one with cancer. Runners who had survived cancer wore Survivor tags on their bibs. I made a sign for you and hung it on the wall of honor and wrote #TeamRavi on my race number. There were 330 and runners in this race, most of them women. Some were fast, some were slow, but all were determined to finish this run. People ran with dogs, kids, strollers, etc. It was a moving festival which ran out into the park and around the lake. It was humid and I was wearing your Fight Like a Kid cancer shirt, which is cotton, and it very soon was drenched. I didn’t care, I was out there running for you and for everyone who is fighting or has fought this demon called cancer. I was pretty happy with my time, 32:42, with an average pace of 10:28 a mile. I was in the top third overall and 8th in my age group. I did not see any cardinals or monarch butterflies on my run, but I felt your presence. I ran into an old club member during the race and after the race the race director came out and gave me a huge hug. She has followed your story for years. There were tears on both sides. Your daddy met me right after that and we chatted with people for a few minutes, got some treats and headed home. Ravi, I was so proud to run this race both for Gabe and for you. This will become an annual tradition.

We got home mid-morning and had a snack. The dogs were anxious to go for walks, so I took them out. I had a lot of feelings to work through, and I think best on my feet. The dogs and I walked at least 5 miles. I call this grief walking. There was a huge pit of emptiness inside of me. I just kept walking. If I run and walk far enough, will I find you?

On a cheerier note, I am on the Gather committee, making St. Clement’s and other churches more autism and sensory friendly. We will begin meeting next month. There are two part time positions open to help our committee do our work. This week Elizabeth asked me to sit on the hiring committee to help choose these two people. I immediately answered in the affirmative. The only hiring I have ever done was in finding PCAs to help you and I let you guide the hiring process. You knew who you liked and trusted. Jessie, Peter, Alissa, I am looking at you. Anyway, it will be a different view being on the other end of the hiring process. I will let you know how it goes, though this will not be until early November.

Ravi, please pray for your nonbinary sibling, Mercury. They have made some bad decisions and published an essay about our family that is completely untrue. They used you for a ploy for sympathy but did not even get the part about your cancer right. They misspelled your grandmother’s name and said that we had disowned them and threw all their possessions out on the front lawn. As you know, this is patently untrue. They called a domestic on us and 4 armed policemen raided our house on what had been a quiet Sunday afternoon. That trauma still hangs with me. I did not see Mercury that day and we have not seen them since. Three years have passed. Anyway, it has been a very strange and week. I feel like we have suffered a death and a very messy divorce in less than one year. I hope and pray for reconciliation, but this is a lot for Mercury to walk back from. If they ever reach out, I will gladly answer them, but this wound will take many years to heal, on both sides.

Ravi, my love, I was so proud to run for you and to raise research funds to fight osteosarcoma and other rare cancers. You and Gabe did not die in vain. We wish you were still here with us, but please know that your name and your story still carry an impact. I am still working on getting a publisher for your first book. I look for you in cardinals and monarch butterflies. I carry you forever in my heart. Love you to the moon and back. Mom.