To Emmy
I wasn’t surprised when you told me you were taking a job with a different company. We’ve long been aware the reimbursement rates AZ DDD (Division of Developmental Disabilities) gives music therapy clinics isn’t sufficient to pay therapy providers an adequate living wage. New grads come, get experience, and leave for companies who can afford to pay more because they won’t accept DDD- that’s been the cycle we’ve become accustomed to over the past 7 years. Even though we’ve come to expect it, of course we were still sad to see you go- and very grateful for the work you have done with our son. We appreciate your patience (especially during teletherapy sessions), your suggestions for verbal shaping, and your positive attitude while working with Tony. Thank you so much for everything you contributed during the year you worked with us, and we wish you the very best at your new job.
A Personal Note
Before I go into any reading recommendations, I would like to take a moment to reflect on the recent decision of our state’s Attorney General to enforce the 1901 territorial abortion ban as the current law in Arizona. For those of you who are not aware, this law provides no exception for rape or incest- a position that is more conservative even than the one taken by our former church (this can easily be verified on that Church’s official website), which did officially recognize a woman’s right to make a choice under those circumstances without facing guaranteed church discipline.
I am, of course, sensitive that some of you may hold different views- and that is OK. Just as I will respect you when you advocate and support for your own differing positions, I am asking you to hear my position as a child who experienced sexual abuse growing up. I thankfully never had to make this heartbreaking choice, but having to carry a child from those circumstances would have absolutely done irreparable psychological damage to me. Survivors of incest and sexual assault did not ask to find themselves in their circumstances, and when you are in that situation, especially as a minor or a victim of incest, the first move is rarely to run to the authorities or find access to emergency contraception (even assuming a young victim is aware that option exists, which most probably they would not) because of the power dynamic between the abused and the abuser. I have seen cases of children as young as 11 in other countries forced to carry a baby in these circumstances to term…a situation which also then will likely do permanent damage to the lifetime expected health of that young mother. So I find that I cannot personally support a law that is so restrictive.
My sister expressed to me that a person can still be pro-life and want to see choice preserved for others in certain circumstances. I agree with that. Therefore, I have personally chosen to sign the petition to get a measure to restore abortion choice to women on the November ballot in Arizona. According to the reporting by KTAR, the next opportunity after this year to get such a measure on the ballot would be 2024. For anyone else who may feel the same way and should have interest in signing this petition, this group only has until July 7th to collect the necessary signatures and you can find locations for signing given by clicking the link below:
Some Reading To Consider (you can click on the titles below for links to the articles):
“Sabrina’s Parents Love Her. But the Meltdowns Are Too Much,” by Joseph Goldstein, reporting for the NY Times
I think it is important for everyone in our community to listen to the stories of families such as ours and such as Sabrina’s- where the available community supports/resources are inadequate or non-existent, where parenting means accepting the risk of getting concussions, chipped teeth (I’ve personally chipped teeth because I got cracked in the head trying to keep Tony from self-harming), broken bones, or other injuries just to try and care for your child.
“School District, Parent in legal battle over child’s 300K per year education,” by Dan McCarthy
How does successful schooling happen for a child with rare disorders and needs the local school districts are inadequately funded and staffed to meet? What happens if the parents can’t afford or are unable to keep the child home? What happens if they can’t afford the legal fees of having to fight the school in question to require them to provide the level of care needed for their child? What is our commitment as a community to caring for individuals with rare genetic disorders and their families?
I know from personal experience that districts do not want to give so much as a one-on-one aid to children who require it for successful learning. We were in a position when Tony was younger where I had the choice of pulling Tony out to try and meet his needs or lawyer up. Our brief experience in the public school system involved:
*Denied request for one-on-one aide despite statements from the medical and therapy team that it was required.
*The teachers/aids illegally blocking the doors with desks and bookshelves to keep children with limited impulse, risk assessment, or cooperative skills in the classroom.
*Two occasions where I returned children to the classroom who I found walking around in the hallways while I was on the way to pick up my son that had left the room after staff removed those bookshelves and desks at pickup time, and the teachers weren’t even aware those particular children were missing until I brought them back.
*Multiple occasions where our son’s speech device was removed from him because they didn’t like that he was asking for things they didn’t have in classroom.
*Failure to prevent him from consuming gluten, despite being provided with specific gluten-free items and being made aware of his sensitivity and assuring me he’d be monitored and assisted appropriately during snack times.
And I could go on. There are reasons our son has been home with me for the time being…and our family is not unique. Which is why this article is recommended reading.
And, a couple more interesting articles I saw this month that I think are good to be aware of:
“More than 30 years after ADA, cities fail to be accessible,” by Newsy as reported on ABC15.com
“Revoked: Gilbert group home at center of murder investigation loses license to operate,” by Erica Stapleton, reporting for 12 News.
