And Now We’re Teachers Too
By Kim Rossi
My three daughters are home from school and their day program until at least early April. All indications so far are that the April date given is simply to keep parents from grabbing pitchforks and torches and storming the admin buildings. As a whole, AofA autism parents are the strongest, most dedicated, capable, unselfish humans I know. Oh dear, we're humans. Many of us aren't the young thirty somethings we were when we started our jaunt into the rabbit hole. Or forty somethings. We're in our fifites or older. Being a 24/7 caregiver takes a steep toll. We have to try to get our rest, keep our heart rates below "kaboom" and help our children, may of whom are adults themselves, process this dramatic change in their routine.
All in all, my girls are rather easy going. They circle the house like three beautiful planets, each in her own orbit in a separate galaxy from her sisters. A separate universe from her "peers." One is more independent than her sisters, who come to me several times each hour to fix hair, snap a photo of a nursery school video, pull up socks, detangle beads and other rituals that are important to them. Important to them and so, important to me. Still, when you have three with full autism, the odds are stacked against you. It's kind of like bringing a knife to a gunfight. I am in motion from the moment my feet hit the floor. I stop at around 9:30 after the girls go to bed. I'm very lucky they are good sleepers, I don't take that for granted.
I am blessed to have budgets for staffing through our CT Department of Disability Services. I have a kick ass team of providers whom I trust and adore. But we're in quarantine - and so I can't have them here right now. They depend on their "side job" here for income. We're all struggling.
Regarding school, all parents are wondering how to hold down a job and teach their kids with what's being called "distance learning." I work from home, which helps. But my day is busy constantly not just with this the main AofA site, but with our social media, keeping Facebook and Twitter going - we have a large following on both. I'm a single parent and 100% on my own financially. I promised Dan Olmsted I would guard the keys to this site with my life.
My youngest daughter attends a private out placement. They sent home a gigantic binder chock full of social stories, activities, her token board and even manipulatives. They created a shortened IEP and highlighted goals and how to meet them. I have a roadmap to help her. IT. IS. AMAZING.
Others have not been so fortunate. Schools sent their kids home with a wing and a prayer and a "take care, brush your hair," of nothing.
What are you doing to cope?
KIM
Their father doesn’t have to contribute? My ex has to pay into specified trust so it doesn’t affect her benefits for our adult daughter.
Posted by: Debbie Conroy | March 18, 2020 at 05:37 PM
Just so you know, MANY of us teachers are very very upset that we were given no time or permission to prepare our students for what was to come, & now are not allowed to provide any work for them. We are waiting for direction from our districts/counties who many of us feel are moving unreasonably slowly. This type of ill preparation should not have been the case when we have so many other emergency preparedness scenarios in place. So many of us are willing to work & help. We are grieving the loss of our students & the complete aborting of such a significant part of their & our lives. Everyone, call your districts & county offices. I know many are trying, but the leadership is sorely lacking.
Posted by: KP | March 18, 2020 at 04:24 PM
The lassies themselves, what will they be thinking about ? changes to their usual normal routine?
Do not presume people with a learning disability or difficulty will not appreciate or understand a basic explanation for a reason for a change to their normal routine /circumstances !
Why no school? or day service provision ?
Different routine , and a good handwashing song to make it fun !
Sing- along- together. Hand -washing fun song routine .
The Singing Kettle.
John Brown's Baby From The Wild West Show YouTube
Posted by: Morag | March 18, 2020 at 01:26 PM
You are an inspiration. I am in awe of everything you do. Thank you.
Posted by: Maureen Fischer | March 18, 2020 at 12:51 PM
I am convinced this is another diseaase-mongering boogey-bug, except they are pushing the totalitarian rule agenda much further. The previous disease scares were measles, ebola, Zika, H1N1, SARS Asian bird flu... Mass slaughters were predicted, chaos, threats to humanity, the collapse of civilization, emergency hearings, emergency funding, emergency measures--and nothing came of any of them. Not a single follow-up report was seen in MSM or most anywhere else. I did see that the Brazilian Health Ministry conducted a nation-wide study and found many more cases of Zika, but very few more cases of birth defects. So BHA declared something else must be causing birth defects. It didn't mention that they were dumping pyroproxifen larvacide in drinking water prior to the Olympics.
Every disease scare follows this pattern. Why not this one? They are all bogus boogey-bugs used to frighten We the People and manipulate us. The only difference with this one is that it is in open cooperation with Communists, and the manipulation has gone far far further than anything previous. This is starting to look like the final Communist Revolution USA.
Posted by: George Mackenzie | March 18, 2020 at 12:43 PM
Kim-You are an amazing mom and I admire you for your strength and courage caring for three girls wih autism during this pandemic crisis. My adult son's day program is also closed indefinitely as are all day programs and schools here in New York. I am trying my best to keep him busy while we are at home in a state of lock down. They are advising everyone to stay home except for food shopping and getting necessary medications when needed. All restaurants have been shut down except for take out and all gyms and other public places are now shut down. Gatherings are restricted to no more than 10 people, but they say it would be better to send people text messages, phone calls and emails rather than meet in person. Our governor says we are going to run out of hospital beds and ventilators soon as we have the highest number of cases in the nation. No one knows how long this will last and we are just trying to get through day to day and handle a very stressful situation that has never happened in our lifetime. I wish you and all parents in our situation with special needs children and adults all the best in trying to cope with a VERY difficult way of life. God help us all to get through this.
Posted by: Gayle | March 18, 2020 at 10:02 AM
My heart goes out to you, Kim. Your selfless dedication to your girls is touching. May this storm pass quickly.
Posted by: goldenchameleon | March 18, 2020 at 09:25 AM