Tag: parenting

18 months and an agent pitch

Dear Ravi,

It has been exactly 18 months since you passed away in my arms. I miss you every day. I look for you in the cardinals and the newly budding flowers. I hold you in my heart forever. Tomorrow is a big day. I am attending an all-day writer’s conference and have an opportunity to pitch my manuscript to an agent! I am excited and very nervous. I cannot bring any notes with me into the pitch, relying only on memory and trusting that you and God will guide me. Follow along for my pitch:

The setting of this story is in St. Paul, MN, in my neighborhood and community, Bridge View School, a title 1 Level 4 school where the main character spent 13 happy years, and Masonic Children’s Hospital.

The main character of this memoir is a Houdin-esq young man by the name of Ravi Herndon. He has a penchant for colorful socks, jaunty chapeaus, Subway sandwiches, sour patch kids and Swedish fish. Due to his autism, he does not speak using mouth words but can communicate volumes.

There are three points of pivot in the manuscript. The first occurs when Ravi is 15 and develops treatment resistant epilepsy. The second happens when Ravi is 18. Though he has been in speech therapy since he was a 2-year-old, he never uttered a single mouth word. Therapists would offer him 2 or 3 choices on a sheet of paper, but he would not make a choice because he did not like what was offered. Teachers suggested that either he was a “non-communicator” or was “just slow”. I am here to tell you that all behavior is communication and that Ravi is not slow. In his 18th year he had a wonderful speech language pathologist who realized that Ravi did not need 2 or 3 choices, he needed over 100. We jumped through all sort of insurance hoops to get him an Augmentative Auxiliary Communication device, otherwise known as an AAC. This device allowed Ravi to tell us where he wanted to go, who he wanted to see, how he felt, to order from a menu, and many other options. Suddenly, 18 years of non-speaking broke forth from this AAC which we lovingly dubbed Sam. Ideas, and words, and complete sentences bubbled forth and it was game changer. It turns out that Ravi had a lot to say! The third transition occurs on December 9, 2022, when Ravi is diagnosed with Stage 4 Osteosarcoma, a rare and aggressive bone disease.

This manuscript grew out of a blog. When Ravi was diagnosed in 2004 there were much fewer autism diagnoses and even fewer supports. I had a highly anxious, non-speaking toddler with huge sensory issues. Somehow, I had to figure out the day-to-day things like brushing his teeth, washing his hair, clipping his nails, going to the doctor or dentist without causing him undue trauma. I began writing about our adventures in hopes of providing a road map for other parents of newly diagnosed children. I did not want them to have to recreate the wheel. Over time, the blog gained momentum and now reaches over 4,000 readers per year in at least 15 different countries. Parent, teachers, doctors and dentists began responding to me telling me how my blog had helped them better inform their practice.

Unlike many parenting memoirs on autism, this story does not end on a triumphant note where a therapist comes rushing in to save the day, Ravi begins speaking in mouth words and we all live happily ever after. Though this story does not end as how the reader might wish for Ravi, it does end on a note of strength and hope. Autistic services end when a child reaches adulthood. Modern medicine sometimes fails. My hope is that I have created a map to help parents advocate strongly and lovingly for their neurodiverse child in a world that often does not understand.

Muted?

Dear Ravi,

The world is going nuts. There are ICE agents all over the metro area and beyond. Ordinary citizens are being dragged from the cars and disappeared. Our so called “president”, I will not say his name, thinks that our lovely Somali community is garbage and they should all be deported. The vast majority of them are US citizens. I think of the awesome nurses and aids who took such good care of you at Masonic Children’s Hospital, many of them were people of color. I fear for them. Minnesota is a place for everyone. Our diversity makes us stronger. The only thing we do not need is ICE.

Today, Daddy and I filled up the SUV with groceries and supplies and took it to your beloved Bridge View School. We have been a part of that community for nearly 19 years. As you know, most of the students there are children of immigrants and their parents are afraid to leave their homes to take them to school, to go to work, to get groceries, etc. BVS was oddly and eerily silent. The doors were locked. The once busy, bustling halls were devoid of students. A few staff with walkie talkies were near all the doors, ready to report any sign of danger. It broke my heart. We delivered our groceries, diapers, and wipes, promised to be back again with more supplies next week, and drove away. I felt like I left a piece of me behind. We love BVS and will always support them, as they supported and loved you from the time that you were 5 years old until you passed away at age 22. They are good people.

Much to my amusement and disgust, I found out that Facebook is muting all of my blog posts. Apparently, the algorithm does not like someone who writes about peace, loving one’s neighbor, autism, or God. Your daddy and I are pacifists! I do not see myself as a threat, but I hope to be a light bearer. I want you to be remembered. I want to talk about autism and osteosarcoma. I reached out to many of our friends and asked them to go to my website and subscribe to our blog. It’s free, I hope it is hope giving, and I want parents of autistic children to have a safe place to come.

It is very cold here. The sidewalks are extremely slippery. I have not walked the dogs in weeks. I am too afraid of falling and of someone possibly hurting our dogs. If Kristi Noem shot her own dog, what would stop an ICE agent from taking a pot shot at one of ours? The ordinary world is no longer ordinary.

Ravi, you were one of the bravest people I have ever known. Please help me to be brave. I want to keep reaching out, delivering groceries, helping people through our church. I told you how happy I was to see a church full of immigrants last Sunday. I hope they felt needed and loved and will keep coming back. God is love. St. Clement’s is love. I have checked in with all the people who helped me care for you and they are all safe right now. I will continue to do daily check ins. I know that Mercury is somewhere in the Metro area and I pray that they are safe, too. These are very strange and difficult times. I miss you profoundly but rejoice that you are safe in heaven with other dear friends and relatives who have gone before and after you. I will hold you in my heart until I can hold you in my arms. Love you forever, Mom.