Categories: Atypical Family Date: Dec 18, 2014 Title: Timing Is Everything
By Deborah Cavanagh
My 17-year-old daughter, Amanda, keeps me on track when it comes to our daily schedule. She knows when we should leave for school. She points out that it is noon if she is home for lunch.
My 17-year-old daughter, Amanda, keeps me on track when it comes to our daily schedule. She knows when we should leave for school. She points out that it is noon if she is home for lunch. For get-togethers with friends she must have the arrival, duration and end information. Heaven forbid if 5 p.m. comes along and I am not in the kitchen making dinner. And when it is her assigned bedtime, she heads upstairs, announces she is “tired and cranky” and goes to sleep.
If we have a plan to go to the movies she will run through a litany of questions: What movie are we seeing? What time is the show? Is it at Shoppingtown? What time are we leaving? All reasonable questions—except they will be asked over and over and over.
You might be envious. A child who wants to be on time, a teenager aware of her responsibilities. And most of the time I appreciate her interest and concern for what is next. But sometimes it makes me cranky enough to want to put myself to bed. And that does not bring good mental health or happiness to anyone in our family.
I believe her attention to time and other minute details is due to the fact that she needs activities to occupy mind and body. Something on which to focus other than the ever-changing minute on the clock.
“Mom, it is 5:01. Mom, it is 5:02.” I am not exaggerating.
Her lack of chores and responsibilities is my fault. Amanda has Down syndrome. I approach her development expecting her to learn and grow at her own pace. But I forget she is 17. I don’t always remember to raise the bar to the next level. When repetitive behaviors surface, it is usually because I am not treating her as that capable almost-adult she views herself to be.
I initially blamed the Down syndrome. I heard from parents of young adults with Down syndrome that obsessive compulsions increase with age. Stubborn, set-in-their-ways patterns emerge. Some of these challenges might be inherent to the syndrome. But in my experience, if Amanda helps plan her day and has productive activities to occupy her time, she is less likely to drive me nuts.
My approach is two-pronged.
Roman_Gorielov | Getty Images photo
Discuss the daily schedule with input from Amanda.
I have thought about hanging a whiteboard on which I could write the schedule for the day. I hesitate for two reasons. I do not have a good place for it to be displayed. And a close friend of mine tried this with her daughter with special needs. My friend would refer her daughter to the board when repetitive “What time is . . . ?” questions were asked. She woke one morning to find the board off the wall and in the garbage. I sense a similar fate for any whiteboard brought into my home.
Instead, I have taken to having a bedtime conversation with Amanda discussing her upcoming day.
“You may call your friend tomorrow at 9 a.m. to discuss your planned get-together. Do not call before 9 a.m. as they will be sleeping. After you eat breakfast you must make your bed and clean your room. Your friend will arrive around 11:15. She will have lunch with you. Lunch will be at 12. She will leave at 4 p.m. as you are altar serving at church and need to get ready to go. Church is at 4:30.”
I will ask her to repeat certain items to make sure she is paying attention. She now knows what to expect. She understands the tasks she needs to complete. In the morning when she asks me what time her friend is coming over, I am able to toss the question back to her.
“What time do you think she is coming over?”
This way, she has to think about it and come up with an answer. The hope is it might stick and she won’t ask me five more times.
Assign tasks relating to activities and home life that are appropriate and meaningful.
I have a pet peeve. I get very annoyed when students with special needs are assigned tasks at school to keep them busy—but which have no relevance or purpose. Seeing a student pushing a cart through the hallway with a roll of paper towels on top bothers me. Possibly there is some sort of motor-planning exercise going on. Maybe there were sequential steps that needed to be completed. But I find it hard to believe that roll of paper towels needed a 15-minute ride.
So it would be hypocritical for me to assign Amanda meaningless household chores. I also need to realize she is capable of helping. Trial and error works best. And noticing clues. One day Amanda took the laundry basket, filled it with clothes from her hamper, and plopped it at the top of the stairs. Laundry is now one of her assigned duties. Yes, we needed to practice how much detergent to put in the machine. I remind her which settings to use. Now she is able to rotate clothes from washer to dryer. She folds. And she proudly shows me her completed work.
Setting and clearing the table. Putting the dishes in the dishwasher away. Vacuuming. All chores that need to be done on a regular basis and can be handled by Amanda.
Children with special needs are capable at different levels. I know it takes time, energy, patience and creativity to find tasks that are appropriate. I also know it is easier and more efficient to do these tasks ourselves.
The tasks can be as involved as planning a dinner and cooking, or as straightforward as putting socks away in a sock drawer. But having purpose, feeling proud and being productive are essential. Take it from one who is trying to learn: Chores can diminish the bad moods and bring mental health to the whole family.
Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs and publishes the blog www.momofmanyneeds.com.