by Misty Wolf
Society today has developed a stigma surrounding disability and the parents staying home as paid providers to care for their disabled children. The perception that I have heard the most often when I explain Caylie’s disability is, “Oh, so your just another stay-at-home Mom then?” Customarily at that point, I often feel the need to go into a dissertation to explain a parent’s right to make the best decision for their child.
For each IHSS provider (caretaker), their client’s needs are unique and vastly different. In Looking for Caylie, I give readers a look into what most days continue to look like for us. My main job as a provider is to ensure Caylie doesn’t wander away, whether at home or when we are out in our community. And that is just one of many of her needs as a disabled child. I also do many other things, daily or weekly, as a provider for Caylie, but one is keeping her safe from things she doesn’t realize can hurt her. I am still a mom, day in and day out, but my child requires more care and assistance than the average non-disabled child.
Caylie has been remarkable in handling the pressures related to the pandemic. For Caylie, an essential element of her life is daily routines. She needs to know our plans for the week and the daily plans each morning. Our routines are imperative to her navigating through life as simply as possible with her disability. Although it wasn’t ideal during the pandemic to have online learning, Caylie did adapt well to the online learning environment because her teacher and classroom aids made extraordinary efforts to keep Caylie engaged during classes.
The pandemic, for me, was somewhat frustrating because Caylie did have some signs of depression outside of her disability. It is challenging as a mom to see her not only navigating a world that has a stigma around the disabled but also struggling with her mental health. It made me feel awful that with everything she has gone through, to sees symptoms of depression on top of it all. Fortunately, once Caylie returned to on-campus school, the symptoms disappeared, and she was excited to reunite with her friends.
The pressures of the digital age and misinformation about cognitive disabilities can be very frustrating. Caylie is aware that she has a genetic disability and may face different life challenges. In some cases, she will correct people trying to explain it’s not the same as just Autism or OCD, or ADHD. In many cases, society wants disability to fit into predetermined categories versus the reality that it’s not always possible as each disability is different and presents itself differently within each individual. There is no one size fits all with a disability.
I believe it is essential for Caylie to understand that because she has a disability and also that there are support programs designed to help her with her disability. Wherever Caylie might be, we as a family have made a point never to hide the fact that Caylie has a disability. If people ask about Caylie, I want them to know how proud I am of Caylie. She has made strides in her life despite her disability in a stigmatizing world. When we have both faced so many overwhelming setbacks, I am still so proud of what we accomplished together every day.
In Looking for Caylie by Misty Wolf, author Misty Wolf takes you inside her journey as she fights to discover the cause of Caylie’s rapid cognitive regression and mental health deterioration.
This blog tour is organized by Lola’s Blog Tours and the tour runs from 11 till 24 July. You can see the tour schedule here.
By Misty Wolf
Genre: Non-fiction Memoir
Release Date: 15 July 2022
In “Looking for Caylie,” author Misty Wolf takes you inside her journey as she fights to discover the cause of Caylie’s rapid cognitive regression and mental health deterioration. Wolf bravely challenges traditional IEP narratives in education by dismantling the school vs. parents mentality and establishing each team member was on Caylie’s side. The authentic and raw accounts as Caylie and Misty’s navigation within the US medical system and disability support reminds us that we are not alone in our journey.
– Signed copy
You can watch the book trailer for Looking for Caylie here on Youtube
Misty Wolf resides in Santa Clarita, California, alongside of her beloved Caylie, her parents, and their Shih Tzu named Gilly Goose. Misty focuses her writing and speaking on her experiences of being a mother of a child with a rare mutation disability. Misty shares her time between writing and being a full-time caretaker. In addition to her book and writing works, you can find Misty at home crafting or watching Angels Baseball.
Prior to being a full-time caregiver and writer, Misty enjoyed a career in quality and project management. Misty completed her educational experience with a Bachelor of Arts in Project Management with a minor in Criminal and Civil Law, and Masters in Criminal Justice with a specialization in forensics. Misty has always had a dream of becoming a lawyer. She advocates for always finding the truth logically in situations that translate to her experiences shared within her book.
There is a tour wide giveaway for the blog tour of Looking for Caylie. These are the prizes you can win:
– 3 big prize packages that contain: a tumbler, 4 pens, a mini-tote bag, a custom notebook, a custom keychain and an autographed advance reader copy of Looking for Caylie.
– 2 author swag packs that contain: a bookmark, a rack card, a button or lip balm, a magnet, a sticker and a key chain/ mini lotion.
Here’s a picture of the big prize package:
For a chance to win, enter the rafflecopter below:
a Rafflecopter giveaway