No Longer a Hero Mom and Dad

Lately I’ve been feeling disoriented. Flailing around a bit. A weight has been lifted off. In a sense, I’ve lost a part of my identity.

Now, no one around us knows that we spent 25 years raising children with autism. Unless we tell them.

We can pass as parents who have raised ordinary children. We don’t have to make time and planning in our schedule for speech and occupational therapy. We don’t have to go to IEPC meetings with committees to make a plan for their needed services. We don’t have to make a case for their continued need for social work and pragmatic speech therapy. We don’t have to practice social skills at home and be on the lookout for meltdowns.

We could pass for normal parents. We could let people think that our three adult children are just like everyone else’s children.

Five years ago, we left the community and the church family where we raised them. In that community, we couldn’t help people knowing that our children had autism. We shepherded them around. They needed protection. They needed prompting. We needed to prepare teachers and youth leaders. How to talk to them. That it was okay to interrupt discussions about kittens or video games. A large number of people in our former church knew them. They knew us, and considered us exemplary parents. Parents of utter patience. Hero parents. But of course, they didn’t want to be us.

We couldn’t pass for normal parents then. But now we can, if we want to. If we didn’t want to get too close to new people. Two of our kids want to pass as neurotypical, although autism still affects their social interactions. My son is very successful in some ways. He’s making six figures as web developer. He owns a condo. His sister who lives with him has unrelated health problems, which keep her from working. Our oldest daughter can’t hide her disability. Her job depends on it. She works for a government contractor which employs people with disabilities. Nevertheless, she is a top producer as a high tech chat IT professional.

We could pass as ordinary parents.

Except there are holes. No little league. No travel. No senior class trips. No prom. A lot of holes in our lives and in theirs.

And that is the crux of the matter. That is the foundation of the novel I am writing.


Touching Yarn

I wanna go to Michael’s. In person.

I wanna touch some yarn. I wanna go to Horrock’s and look at flowers.

And touch them. Smell them. Be there in person.

The Ugh Year

A year of Covid restrictions. Covid fighting. Covid death and sickness. Covid mean-spiritedness.

570,000 dead now, depending on your source. This is probably an undercount.

When the new year turned, I was angry. Angry that Trump refused to take this seriously. That he purposely used the fights about Covid for political gain. That he spread lies and disinformation. Callous and cynical. A pathological liar who criminally caused the death of so many. Lies, nothing but lies and disinformation. And smears. And attacks on those who disagreed with his lies. Ugh.

I’ve stayed in for a year except for absolute necessity. I go to work a couple of afternoons a week. The rest of the time, I work from home. I am fortunate my employer lets me do this. I’ve gone into a grocery store occasionally. I have my groceries delivered. I go into pharmacies more often.

I stay in because my husband has cancer and is immune compromised. I also stay in, I admit, because I am afraid to get Covid-19. And any of the variants. So I wear a mask when out and I practice social distancing. We did go to church for a while this summer. But in October infections rose, so we decided to stay home for a while.

We both are fully vaccinated as of next Monday. And we should be free to go out. However, my husband has been struggling with an open sore on his heel since Christmas Eve. Actually, before Christmas Eve. That’s just the day that I finally convinced him to go the doctor for it. In addition he has skin cancer in several locations. Since February 22, he has had four spots excised and a total of six surgeries. After the last Mohs surgery, the surgeon ordered a whole abdomen CT scan to look for other cancers. He has an underlying cancer, myelofibrosis, which puts him at high risk for skin cancers. We are waiting on the results of that scan. Ugh.

So since March of last year, it’s been a tough year. An ugh year.

And yet.

I’ve been able to work from home 80% of the time. Even now, I’m working from home. That may change soon due to the fact that I’m fully vaccinated as of this coming Monday.

I’m fully vaccinated as of this coming Monday. I can go get a haircut, finally. I’ve learned that I like longer hair, but not this long.

Only one person in my extended family came down with Covid so far. That was my sister, a nurse. She works with Covid patients in dialysis. But she thinks she caught Covid when she went to a tire shop, where the manager asked her if she minded if they wore masks (she had come in with a mask on). She told them that she was a nurse and worked on Covid floors and they should put a mask on since she might have it and be contagious. A couple of them sheepishly walked out of the waiting area. The service manager reluctantly put his mask on. And two guys just sat looking at their phones. She thinks it is likely that she caught covid there. She had a very mild case, but the timing is right. Yes, it could have been at the hospital. But it was likely at the tire shop.

Hopefully, I’ve learned to respond less to people I disagree with. It’s mostly a waste of time and energy.

Hopefully, I’ve learned to appreciated getting together with others. And also to limit my interactions so that I don’t get too busy again. I’m not sure what to do with those who refuse to get the vaccine. Those who refuse to wear masks. Those who loudly proclaim they will eat only in restaurants that don’t require masks. For now, I will avoid them, I guess. I pray they don’t get Covid. Especially the older ones with multiple health issues. I know I don’t want Covid.

It will probably take me a while to learn to go out again. To be comfortable with not wearing a mask. To be close to people.