Its been a while since I posted a blog and I really thought I was on a roll. And then, Covid arrived. Life seemed to stop. My mind was consumed with work as a nurse and the uncertainty of that work. It was consumed with wondering if Lola-Dillon was coping in a healthy way in response to not seeing her classmates and gymnastics squad. Thankfully, while Lola-Dillon is missing her friends and routine and the complete grind of gymnastics, she's actually fine. She did ask me once when I thought this would be over, to which I was honest. Covid will not disappear magically anytime soon, but little by little we'll get back to what we're familiar with. Maybe outings with a friend or two, maybe a trip camping, maybe more visits with family.
Madison on the other hand, who is used to staying at home has been coping differently. And in ways that do seem to benefit her, regardless of me thinking they're questionable. Madison has been "talking" to someone weekly for about a year now. (I say "talking" so as to not reveal the person's profession). And I'm glad to say that for once on this autism journey, Madison is actually taking the advice and putting to good use. What others may think of as regression, I think of as progress. She constructed a cocoon-like tent on her bed which has rejuvenated her favorite sanctuary and given her more safety. She's doing pull ups almost every day, on her own without any suggestion from me for her to exercise. Both of these have seemed to help her to sleep better and recenter herself.
Several weeks ago, I noticed she started knocking on walls and doors. Dozens of times per day! And I realized she was doing it in response to her thoughts. The old "knock on wood" superstition. For me it has been an insight into the concerning thoughts she has on a daily basis. Thoughts that worry her so much that she feels she's jinxing herself by having them. I also noticed she's carrying a pocket knife around with her. But I have to reason that she's 18, its secured, it makes her feel better, we have our eye on her. If those things make her feel better and there's not apparent harm, our job is to monitor those behaviors.
However progressive these steps feel, I cant ignore the opportunities she missed out on to make a friend or to speak to other people. No comic con, no art galleries, no trip to California. She wanted to make a friend so badly and when she finally had the opportunity to join a skills group, hoping she'd find that friend, it was cancelled due to Covid and social distancing.
Covid has been an insight for neurotypical people into the isolation that autism bestows on someone. Isolation is devastating, even in 2020 when we are so virtually connected through technology. It doesn't matter. What matters is that we ALWAYS try to take the next step to beat feeling isolated. That is the goal. We get up and do something constructive. We put our best foot forward, even if its just making our bed or sitting on the porch. We just have to keep moving forward and for those of us in the autism community, its always been a challenge but we do it. For us, its always been drive in the car or a trip to Starbucks. Little outings can go a long way. Make no mistake, its still heartbreaking to see my already lonesome daughter without friends, but just when she thought she'd find one, the opportunity gets delayed until some unknown time.
And now I'll share with you my new kind of autism awareness. April is typically a month of fundraisers, awareness campaigns on a local, regional, national scale that her artwork has been in. Its typically me sharing posts about the accomplishments of people with autism or the opportunities they may benefit from. Jobs, skills, inclusion opportunities. However, as a nurse and in light of the current pandemic, I quickly became AWARE MYSELF, that no matter how skilled of an artist she is, no matter what she can put on paper or crank out on an iPad, at 18 she has very little skills to sustain her connection to the art world with the exception of her weekly Tink Tank.
My thoughts were "oh my God, if I get sick, who will do all of this for her? Who will keep in touch and maintain Tink Tank? Who will maintain the person she "talks" to? Who will follow up with connections and opportunities on the west coast and NYC? Who will help finish Clyde? Who will find the next opportunity for her?"
Scary shit. John certainly is a wonderful father, but he hasn't learned this new career of managing an artist with autism like I have. We certainly put his muscles to work, he carries products and artwork. He works like dog, teaching and painting to help support her, but will he know how to get her the supplies she needs? Will she be without all these supplies and tools when I'm gone? Will she become the Outlier that lost her opportunities? Oh my God I have all this stuff and all of her "people" in my brain and in my email and no one else knows this!
If I die, that can all die too, and those are the real thoughts that have gone through my mind since Covid hit NY. I have tried so hard to minimize this to my family, like "it'll be ok, we just need some time to get it under control" but in my own mind I was more like..." oh shit, this is not good and oh my God what if....."
I remember being at work and thinking "this is it...this is how it will happen. I will get sick at work and Madison will be autistic, and lonely, and misunderstood, and unconnected, she will burn herself with the tea kettle water and eventually be homeless or have to live in a group home and maybe get thrown in jail and she will be someone who will eventually be picking up meals for herself on Main Street, because God knows she doesn't make much more than toast and pb and j safely for herself".
These are the thoughts that usually keep me up at night during a time when Covid didn't exist. These thoughts now accompany vivid images of Madison struggling and lonely in my mind that I cannot shake.
So I did a couple of things that I'm praying are never needed. I forwarded John's information to Madison's key people, basically with a "hey, should I become ill, here is John's contact information. You'll need it because chances are he won't think to reach out to you, you have to reach out to him. Please keep Madison going." I'm certain no one expected that. But it was my way to prepare, even just a little bit.
I became aware (like a punch in the gut aware) that at 18 Madison has no public assistance in place for her. And as much as I want to remain optimistic that she will not need it, the reality is that she probably will and that its best for me to plow through the process I loathe and get that established for her. My autism awareness... "you really need to get your shit together, Krissy. Seriously, get it together." Noted!
I also made what I call my "IF" list. The list for John, IF I get sick that has as much information for Madison on it that I can think of. People, places, websites, organizations, connections. Resources that Madison would not be able to reach out to on her own just yet. Honestly, this should have all been done prior to the arrival of a pandemic and I completely failed to prepare to secure Madison's future. Clearly, I have a lot to consider and a lot of tedious work ahead of me.