445AM JRC called me to inform me that when they were preparing Talia to come to NY for her dental work, at 352 AM she had a seizure. Sleep deprivation and stress can precipitate seizures, and Talia had to get up early for her 9am dental work in NY, I am sure anxious as her routine was suddenly disrupted. Instead she ended up in the local ER. My older daughter literally spent 90 minutes on the phone with Massachusetts General trying to schedule a follow up appointment for her. Any individual private doctor’s office that did that would be out of business immediately. I lied in bed awake wondering how Talia is ever going to get her dental work done. I wondered if I have to keep her at my house the night before despite her dangerous behaviors with my husband’s heart condition who was hospitalized last week. Would she have to quarantine after that? I didn’t have the dental work done in Massachusetts because at Boston Children’s Hospital, there were two options. Either they would use restraints to take XRAYs which could traumatize her or she could be put under general anesthesia twice, once for XRAYS and once to have any cavities or other issues resolved. They will not do both at once because they will not lose money keeping an operating room open any more time than necessary to make as much money as possible. I have a private dental office in NY, which I pay for, that will do it all at once. The office in NY agreed to do a 1pm procedure next time although Talia will have to fast all morning. Furthermore, when NY students are placed out of state because there are no appropriate placements in NY to care for them, their Medicaid will only cover emergencies outside of NY. Talia fortunately has private health insurance but many students are on Medicaid having to return to NY for all non-emergency appointments, a waste of resources, and even polluting the environment. Worse, it is bad for continuity of care, but unfortunately, in our society individuals with disabilities come last.
Saying Goodbye to Talia: The Wound that Keeps Bleeding
Sometimes I visit Talia. I try to interact with her during the visits, play simple board games or sing and dance a little, and walk on the nature trail or ride on the swing, weather permitting. She also looks for my home cooked food. However, there is always a pain in me when I say goodbye, a pain I don't have with my older daughter or my brothers. I think it's that she does not understand when I'm coming back, and that she is still a baby to me in some ways and I want to take care of her. She is always calm to leave with staff, but I feel sad she has to be so far away and I only see her every three weeks. I once had a dream I took her back home, she was sitting on my living room floor playing with one of her baby toys. I called her old therapists to come back to the house and put her back in her day school. I then called my mother and told her Talia was back home. First she said, "That's nice." Then I told her I took her out of JRC. My mom then said, "What's wrong with you?" I have to remember I put her away for her safety and that was what is best for her. The video is from our last visit of us playing Connect 4.
www.facebook.com/Dont-Medicate-Educate
Goodbye ABA (Applied Behavior Analysis) for Stuart
After a little over a year of ABA, my brother Stuart's (who has autism and intellectual disability) health insurance informed the agency they will no longer pay for any more sessions. They said because he is in a group home, he already gets services. I am not sure what they mean by "services." Prior to the ABA, while living in his group home in NY he went from traveling independently to a full time job on no medications to multiple psychiatric hospitalizations for aggressive and self-injurious behaviors, ending up on 20 medications mostly psychiatric or to manage side effects, sleeping much of day, while developing seizures, osteoporosis, tardive dyskinesia, gastrointestinal obstruction and obesity. He often refused to go to a day program, spending his day in a recliner. After starting some hours of ABA he has gone more consistently to his day program, started exercising and socializing more. I was informed that due to his age, even if we was not in a group home setting, he would be terminated from ABA after two years. We don't terminate psychotherapy, (talk therapy) or psychiatric management after two years for people who have behavioral problems because of their age or refuse treatment because they live in a group home, but I guess ABA is different.
My Interview on Autism on Renew'd
Renew’d Wednesday, Let Talk Autism ft Author, Psychiatrist and Autism Expert, Ilana Slaff
Two Studies: Skin Shock and Medications Show Skin Shock Works Better for Some Individuals
Medications of Limited Use: 64 randomized placebo-controlled trials, 3,499 participants Results “suggest that currently available pharmacological agents have at best only a modest benefit,” “most evidence supporting antipsychotic medications” but antipsychotics had a “small effect size” Oxytocin, omega-3 fatty acids, selective serotonin reuptake inhibitors (SSRI), and methylphenidate no significant benefit compared to placebo “Larger significant positive effects” “in individual studies with fluvoxamine, buspirone, bumetanide, divalproex, guanfacine, and folinic acid that have not been replicated” Shock Study Much More Effective for Some 173 individual cases between 2001 and 2019 with follow up to 15 years, 80% one or less shock per month “Overall, a 97% reduction in the frequency of severe aggressive and health dangerous (e.g., self-injurious) behaviors was observed in the first full month of treatment” Diagnoses included intellectual disability, ASD, ADHD, oppositional defiant disorder and other disorders Treatment was combined with differential reinforcement for positive behaviors Some students were succesfully faded when the fading was planned. When forced fading occurred by outside authoriotes, dangerous behaviors spiked. https://jaacap.org/article/S0890-8567(20)30265-3/fulltext https://www.graphyonline.com/archives/IJPBA/2020/IJPBA-167/