Teaching Adult Living Skills
Growing up, my siblings and I had a lot of responsibility. We had tasks to do including setting and clearing the table, loading the dishwasher and washing dishes, changing our sheets every week, doing the laundry, cleaning bathrooms, vacuuming, and occasionally washing baseboards.
We also had interesting tasks such as feeding chickens (Nathan taught one to ride on his bicycle handle bar), gathering eggs, bottle feeding baby goats sometimes, and picking the gardens. (On her way to the garden one time my sister decided to walk barefoot and with a paper bag over her head. About half way through the walk, my brother calmly informed her that she had stepped on a snake, triggering her to sprint all the way back to the house without ever looking back.)
I look back on all those things with pride. If my memory serves me correct, we did not complain about our to-do lists. It was routine. My brother, sister, and I all had the same tasks, and we would take turn with certain ones to keep things fair.
Why Didn’t I Do The Same For My Kids?
Maybe because of those childhood experiences, now, as a parent, one of the biggest failures I have felt is not giving my children the opportunity to feel that same sense of pride. They did not receive the routine to-do lists or have all of those responsibilities. It is not that I did not attempt, because I did at various times. It was just difficult. Really difficult. But why?
Life Was All Consuming
The answer has always been right in my face, but I am just now beginning to accept it and forgive myself. The answer is in all of my posts and in the posts of other autism blogs I follow. It is in all of the advocacy, the fights for diagnosis and services, and the IEP’s. It’s in the heartbreak, the anxiety, OCD, and all of the effort that every day consumes
Searching for Balance
But wait, it goes much deeper than all of that. There is this other struggle that is family life and balance. There comes a point everyday where the energy must shift to other members of the household. When that energy shift happens, it is not likely going to be expended fighting and struggling over teaching and enforcing chores. There is this guilt. Having one child with multiple disabilities who takes up lots of attention and energy leaves this presence of guilt that never really goes away. How do you make up for the lack of balance? In reality, it is not by enforcing chores.
Do For One, Do For All
Then, there is this other angle that I know played a factor in my expectations. My oldest being developmentally delayed and having fine and gross motor issues left me with an uncertainty of when to push independence for the other two little ones. While I was cutting up food for Jess, I cut up food for them. While I did for her, I did for them. It was just the easiest system and at the time I did not give it much thought.
Was Jessica’s Lack of Progress on Living Skills My Fault?
Although I continually worked with Jess on daily living skills over the years, she just did not make good progress. For her to be able to participate in certain camps and programs as well as be independent for work, she needed to make more progress. Could I have taught her these things? Maybe, if I had nothing else to do and worked on it day and night for years. I will always question myself.
Since I hadn’t been able to successfully teach Jess those adult living skills, she received “blind services” from an independent contractor who was a certified Vocational Rehabilitation Specialist, and Orientation and Mobility Specialist. The specialist went to school and home to work on daily living skills such as home making, cleaning, cooking, marking appliances, learning to decipher money, and managing a budget.
Services began in Spring, 2008. Training goals included beginning instruction on:
- Placing a fitted sheet on her bed.
- Organizing her room and clothing drawers
- Using the Microwave
- Preparation of pre-packaged microwave food
- Proper etiquette while eating
- Washing dishes (adding detergent, temp of water, learning hot from cold, etc.)
- Using a Braille timer
- Dusting furniture
- Identifying and using measuring cups (1/4 cup, 1/3 cup, 1/2 cup and 1 cup)
- Vacuuming her bedroom
Jess and the instructor did not exactly ‘click’ with each other. The instructor pushed Jess past her comfort zone and Jess fought back (sometimes with pinches.) Jess always dreaded those work days, but also felt conflicted because she knew the purpose was to work toward independence.
Jess made some progress in some of the areas. Specifically, she learned to use the 60 second button on the microwave to heat up food. She enjoyed learning about measuring cups, and now, when we cook together, she understands there is a difference. Jess can use the vacuum, but usually I don’t let her because anything in the floor will get consumed. Then, some tasks were just too difficult, such as putting a fitted sheet on the bed.
Other tasks just don’t make sense for a blind individual with an attention span of about 2 seconds. To dust furniture, Jess would need to keep track of where she’s been and where she’s going. That is just not going to happen. Ditto for washing dishes plus add in tactile defensiveness and that task is not worth a fight either.
Taking A Breather
I don’t remember exactly when we decided it wasn’t worth the fight, but those sessions with Blind Services lasted less than a year. There was a stress and resistance factor that made it not worth it. Honestly, it was a relief when we gave it up. Now, Jess still needs help with all of those adult living skills. We will work on them a little at a time forever, and take whatever small steps of progress we make as we go.
I’m exhausted reading all that you did!!!! Oh my gosh! The saying: “How do you eat an elephant? One bite at a time!”, came to mind. I have friend who has told on a few occasions that a mom is only as happy as her saddest child. That being said, having two other kids to raise in addition to Jess…where did you find the energy? The percerverance? And you did! Goes back to one of my other notes, you are an amazing mom! I might have gone in the closet and never come out!
Diane, you are right. It was one bite at a time. From the time they were all small, it seemed like the focus was making through each day. Having a child with multiple disabilities definitely had a profound affect on our family and on the other two kids. Then, they each had some health issues of their own. Looking back on all of those years, I can realize how justified I felt when I was exhausted and overwhelmed all the time. I never hid in the closet, but my favorite part of the day was the instant I could get them all in bed and go to sleep myself 🙂