A BRIEF OVERVIEW OF OCTOBER

Time for me!

October is National Disability Employment Awareness Month and I wrote a funny story about this subject @ http://www.cathyshieldswriter.com/writing-memoir-parenting/jessica-wants-a-job-maybe-not-anymore.

But …

October is also my birthday month! And last weekend my two daughters took me on a girl’s trip to a resort in the Keys. When they told me they were taking me, I had a fleeting moment of guilt about not taking my daughter Jessica. I told myself that I deserved to celebrate my birthday with a weekend away and refused to begrudge myself this escape. I was turning seventy-one. Live it up, I told myself. Enjoy yourself, free from the demands of taking care of anyone else.

When we got back from the trip, my eleven-year-old granddaughter asked why I didn’t take all my daughters.

Last year, my birthday also landed on a weekend. I had picked Jessica up at the group home, which I usually did every weekend, so she could come home and spend two nights. When she got in the car, something about the way she looked gave me a bad feeling. She looked tired and worn out. I thought about canceling our plans and leaving her at the group home, but I had told her we would make a cake for my birthday, and she refused to take no for an answer.

“I fine,” she kept saying. It was too much trouble to argue with her. And so, the day went on – we went shopping, bought the required ingredients for the cake, and mixed and baked it.

By late afternoon, Jessica was dragging. After an early dinner, I helped her shower and get into bed. That night was rough. She didn’t sleep well. Usually asleep by eight PM, she kept coughing and complaining about her ears. Sunday morning, she said she was fine. Again, no use in arguing with her. She wanted to do more shopping. Jessica was excited about the birthday dinner. By five pm, I was ready for Jessica to go back to the group home. I confess I was thinking, let them deal with her.

At dinner, Jessica didn’t want to eat anything. She wouldn’t say what was wrong. When we finally lit the candles and sang happy birthday, she decided she DID want cake. A few minutes later, she started to gag. I rushed her to the bathroom. The vomiting lasted a minute or two. Again, I thought about how grateful I was- she didn’t have a chance to throw up all over the table. 

Thank goodness my grandchildren didn’t have to witness the same things their mothers used to witness, years ago, way back when this happened on a regular basis. Most of the time, it started when Jessica choked on food, unchewed green beans, or even a piece of lettuce. The choking, followed by gagging, then vomit. I can still hear the sound of the chairs clattering to the floor when she would start heaving. Her sisters would run from the table as though the house had caught on fire.  Paralyzed, Jessica wouldn’t budge and then the vomit would spew all over the plates and surface of the table.

Poor Jessica – I’d be screaming at her to move, as the frightening feeling of choking and not being able to breathe made her more immobile. I never knew whether to try to force her up and could never get her to vomit into a bag. No, the mess would erupt everywhere, cascading down the front of her shirt, over the table, and on the plates. I would hold her hair back as she alternately cried, choked, vomited, and tried to swat my hand away. The clean-up was the worst part.

These days, I am only slightly wracked with guilt when I leave Jessica behind. The question my granddaughter posed reminded me of why Jessica moved into a group home over ten years ago. I still believe I made the right choice.

Yes, I still have moments of doubt. I’ll probably never stop worrying, even though the move has provided Jessica with a greater sense of independence and confidence. And the group home isn’t always perfect. There are times when Jessica gets so intimidated, she refuses to explain what’s wrong. She closes like a shuttered storefront. Whenever Jessica has an issue with the staff, it’s usually because she doesn’t have the words to explain what is bothering her.

They might ask her to get dressed, but she’s unwilling to cooperate. Maybe the top she wanted to wear wasn’t clean.

I am grateful these are minor problems, but it makes me feel sorry for myself. Pointless, I know, but that’s my reaction. While I still don’t fully accept Jessica’s limitations, I know I must.

I recently read about a study that found that mothers of adolescents and adults with special needs had levels of stress hormones comparable to soldiers in combat.

Exactly.

But the guilt? Not too many people talk about the guilt.

I used to feel anxious when we were together in public. Jessica’s tendency to vomit, throw a tantrum and howl would always draw stares. If I limited Jessica to spaces reserved only for people like her, it would have been a loss for her and the community. And what about her sisters? I refused to limit our outings because of their sister. I believed the more people saw children like Jessica, the more the differences in would become familiar and less strange. But that didn’t make it any easier. 

So, my birthday weekend was wonderful. And I didn’t have to take care of a thirty-nine-year-old child.

Jessica called my cell phone over fifty times before I finally muted my phone. She wanted to know what time we would be picking her up on Sunday. The plan was to pick her up on the way back and have a family celebration at home. Although she can read the numbers on a digital clock, those numbers have little meaning. What factors into her concept of time? She can conceptualize the difference between two hours and two days because she’s used to the routines that revolve around a schedule of meals, activities, and sleep, but if I say I’ll be there in an hour, she will call every minute.  

All of these things remind me of why I was driven to write my book. My daughter deserves to have every opportunity to be involved in everyday activities and I owe it to people like her to help normalize the neurodivergent.

And I deserve to have time for myself.