This subject matter hits very close to our hearts. Our youngest “Maggie” was diagnosed as high functioning ASD when she was very little. Our journey, like so many of those in our shoes, has been painful, confusing, frustrating, joyful, and has forced us to re-evaluate who we are as parents time and again. The use of any mood altering or potentially psychoactive drug for children is often met with suspicion and rightfully so. One of the most difficult things we have faced is watching her be overwhelmed by anxiety, confused by social situations and watching her shut down and withdraw totally. We have done all the therapies, diets, etc, not because we want to “cure” her, but because life is hard enough as it is and watching your child struggle and begin to understand she is not the same as other kids is incredibly painful.
Depending upon who you speak to, we are considered lucky because Maggie is high functioning. She does not have seizures, she is mainstreamed in her school, she is able to transition between activities and she has friends. If you spoke with her or saw her standing in line with all her other peers, you would think she is neurotypical. Until you started to look a little closer.She will stand next to her peers, but she always maintains a certain amount of space.Watching her play, she laughs and participates, but if the play deviates from what is “expected”, she will immediately withdraw in confusion. Reading body language is like a foreign language and she will often mistake laughter as someone making fun of her instead of someone just laughing with her. She suffers from incredibly low self esteem and often laments why she was born and how she incapable of doing anything “right”. At eight years old, she is starting to conceptualize that her mind does not work like her best friend. No matter how much I tell her that no one is the same and that differences make us special, she sheds huge tears of frustration and pain because all she wants is to be “like them”. I don’t have enough room to go into the sleep issues.
Through all of this I feel overwhelmed and like I am drowning because until recently, the therapies recommended for kids with ASD have not been a good fit for her. She has been to young to verbalize her perceptions of life and what is going on around her, but high functioning enough that the therapies were not appropriate.
After researching CBD products for my Mom who suffers from chronic back pain and for myself that has a myriad of skin and inflammation issues, I have decided to try CBD with Maggie. It is scary to try something on your child that is unproven. What I do know is what the next suggested steps will be from our healthcare providers. Meds that do have proven negative side effects. The rabbit hole of changing meds, changing the dosage of meds, and managing side effects.
I am going to begin to document our experience.I am not a doctor.I do have an MPH in epidemiology, so I see the inherent weaknesses and biases in this method. This is not a Randomized Control Trial and I only have a sample size of one. I will post the variables that I am observing over time, my course of therapeutic action and my methods of data collection. I have zero expectations.
I am not looking to “cure” Maggie.She doesn’t need to be, but I crave for her to love herself as much as we do.