How are you doing as we face another week of COVID quarantine? Like most of you, I'm off and on social media throughout the day. I think it's fair to say that for caregivers like us, this is an especially hard time. Sure, it's tough to be a cast as a schoolteacher at home for your typical kids. Yes, it's taxing to go from working outside of the home to at home with your babies and toddlers and preschoolers underfoot. Of course it's an adjustment to be home with a husband, wife or partner every day without a break. All valid trials. All new territory for many. But caregivers - like us - face a unique brand of hell. I'd say the same must be happening to caregivers of the population with dementia and Alzheimers. Sundowning is an all day affair these days, I'm sure. Broken routines mean broken lives. Sometimes broken windows. Or bones.
Katie Wright showed me a Tweet from the Chief Science Officer at Autism Science Foundation - aka Paul Offit's Protect Vaccination Foundation and former Autism Speaks employee yesterday that made me sick. Katie shared hardship and was accused of starting a "contest." There are many folks who just can't bear to read about our plight, including the CSO of ASF - and THIS is Autism Awareness Month! Ha ha. Remember that? And lookey look - it seems even Katie Wright did not know Halladay has a daughter with autism. She responded to me in Twitter to leave her alone. Easy, ASF will never do a thing for my kids. I hope she and her daughter are faring better than the families below.
I can't stress enough how important it is for us to band together - keep in touch - reach out - scream - yell - call - text - whatever you need. Keep away from idiots like Halladay who have no clue or compassion. Her response to Katie is dripping with contempt and disrespect. You will NOT find judgement here. I have three daughters with full autism in my small home. And I have it easier than many of my friends whose kids have severe behaviors, and seizures and severe sensory needs. Or who are in the city - cooped up in an apartment.
Here are three families' plights below. I'm sure Autism Science Foundation is ready to step in to help. If you can dress your kids up as an MMR vaccine, they'll be right over. Dress up like RotaTeq and they'll bring you a pony.
My son was admitted to Inpatient Psych last night through the ER. I called 911 due to his violence at home, then he wielded a bread knife cutter at the police and he was restrained in the ER due to attacking staff. His behavior had been getting progressively worse. He only has behavior issues at home. His diagnosis is high functioning ASD, OCD, and receptive language disorder.
I’m at such a low point right now with my son. He’s 7 and regressing. How I know, when he was young he never wanted to try new foods his comfort food was chocolate chip pancakes. I had to keep boxes of mix to keep up, who’s going to deny their kid the only thing they eat? Little by little he started eating different foods to the point I was making chocolate chip pancakes on occasion. Now he won’t eat anything but chocolate chip pancakes, he is having outbursts of screaming. He is so irritated and his impulses are just out of control. I don’t know what to do! I’m working nights now because we are in a state of emergency my shifts will be 12 hours and we can get held up to 18 hours. How am I going to do this?
What options exist for a parent who works full time, and is being expected to care for her special needs child while working from home? This situation is not doable. Her employer is pushing her to do FMLA- but she works for a larger than 500 person organization, and therefore it would go unpaid. She needs income to support her family. She does not have local family support. Additionally, she has a second child she is also caring for. Are there any existing programs, grants, or other there options for her? My heart is breaking for her that things are so hard and I don’t know how to help.