In the mornings before work, I often try to take care of some of the standard household chores. Sometimes unloading the dishwasher, sometimes laundry, sometimes a general sweep of the kitchen. I'm tired when I come home from work so having some small sense of order at the start of the day makes me feel accomplished. It is a wonderful feeling.
This week I was feeling particularly anxious about getting things done and there were two loads of laundry that needed to be folded and put away. RJC always takes care of the towels which is a big help. I happened to notice that a good deal of the laundry was clothing of hers. When she was still in school they had worked on folding laundry and at various times I had her help. Over time, though, I had simply started to fold and put away her clothing along with ours. Since I was in a bit of a hurry and really wanted to get it all done I called her over, handed her clothes and said "Here you go. Can you fold and put away?" She took the clothing without hesitation, went to her room and folded and put away all of her clothes. I was honestly completed shocked. First I figured she'd say (or yell) "No!" Once she took them from me, I assumed she'd just cram them into her drawer. Instead, she was compliant and content to help and folded everything with more care than I would have!
It started me thinking over the course of that day, that a big error I was making as her mom is that instead of thinking about her capacity to learn, I sometimes inadvertently create in her a sense of incapability. The result is that RJC is deprived of being a helpful family member and an independent young woman who feels the thrill of successfully accomplishing a task. It also potentially creates a young woman who comes across as entitled and assumes that others will be at her beck and call and will take care of her every need.
This is not at all the type of person I believe my gal actually is - and if she does behave this way at times it is because I have not allowed her to grow to her potential. That's on me. Not on her.
Believe me, this is not at all my intention when I do tasks that she is capable of doing for herself. Usually my thought process is:
- I'm in a rush, let me just get this done myself.
- She's tired/grumpy/busy with her iPad so I'll just take care of this.
- I know she can only fold the shirts so I may as well do them while I do the rest of the clothing (note: turns out she can do all of the clothing)
- I don't have the patience to be sure she does it right/make sure she puts everything in the right place/argue with her to get it done.
I can justify my thought process because, well, it's just easier at that moment in time. Honestly, sometimes doing things myself really is so much easier than remembering that she has an amazing capacity to learn and taking the time to be sure I am feeding that capacity to its maximum!
Part of the struggle of having an adult child who needs constant supervision and still loves all things preschoolers love, is that it is easy to continue to actually view her as a child/toddler. It is so very easy to forget that she is also an adult who has indeed gained skills over the years and can continue to gain skills. It is also:
- Easier to avoid conflict, especially if it's a task that will take some insistence on in order for it to get done (experience a full blown tantrum that includes huge holes in the wall and it can be easy to convince one's self of the justification for this one).
- Hard to find the time to teach skills.
- Difficult to know how to teach skills.
- Hard to restrain one's self from "saving" the her when she is having difficulty.
The last one is, by far, hardest for me personally. I hate seeing her struggle. I feel guilty that it may take her twenty minutes to do what I could do in ten minutes. When she says "Help please" my inclination is to leap in and complete the task - when all she may need is a prompt or encouragement to continue.
So on this morning when I was simply desperate for whatever small amount of help she may be able to give, I was completely floored by her willingness to help as well as her ability to complete the task. Yes, then in typical mom fashion I ran to grab my phone and record the moment. I also felt horribly guilty that I had not continued to reinforce this behavior and that I had assumed what she could not do, rather than what she was able to do.
The very thing that makes me crazy is when I see others underestimate her abilities. Yet I was doing it as well.
This was a lesson for me in dignity as well as in the importance of independence. She was so pleased with herself when she was finished that she came in to the bedroom where I was folding the rest of the clothing and said "All done. Good job RJC." Heck yah! It was a good job and she recognized it as such.
We have a Board Certified Behavior Analyst who is always encouraging us to try to teach new tasks to our gal. This month we have a goal to start to teach her to put food safely into the oven and take it safely out of the oven. We thought it would be appropriate since she loves to bake cookies and she has pretty much mastered the actual process of mixing the dough and dropping the cookies on the tray independently so this would be the last step in her being able to bake cookies independently. I admit, I balked. If you know me, you know I am a professional worrier and the thought that she could burn herself...I was not completely on board though I agreed we should try. You know what? I think she can do this. We will carefully think out the process and write the steps out for her. We will model the behavior, we will supervise very closely, we will prompt, and we will encourage and I believe that she will indeed be able to master this new task.
She will be proudly independent, she will be confident, and she will be successful. Exactly what we want for our RJC.
Actually it is exactly what we want for our both of our daughters. It is what they deserve and what we, as their parents, should feel obligated to give to them. Both of them.
Yesterday, I was on a phone call with an employee from Social Security. She was asking me a bunch of questions because it was time to reevaluate RJC to see if she is still eligible to receive SSI. I know. I find it crazy too but such is the system. She asked questions like:
"Is she employed?" (no)
"Does she still live at home?" (yes)
"Has she been married within the last two years?"
Now you'd think I would simply say "no" to that last question but my snarkiness came out and I replied, "She still watches Barney the Dinosaur and he is her true love."
There was silence, then she said so very kindly "I am sorry. I know these questions can be very hard."
Well yah.
For whatever reason, this is one of those areas that sets off my HUGE sadness about my gal and her autism. Maybe it is because there is nothing that has ever made me happier than being married and having my girls. The idea that RJC has that same door closed to her breaks my heart. Yes, I understand that if she were a neurotypical child, it would not mean she would necessarily get married and have children - maybe she wouldn't want either of those things for a zillion different reasons - but she would have the capacity to make her own choice.
This is one of those life things that she cannot choose. It is just an "is."
Most days I do not dwell on the idea that RJC is diagnosed with autism. Mostly I think of her as her. I know her autism affects every part of her being, but I think of those things as RJC traits. Just part of her personality and everything else that makes up who she is.
Then something small happens - in this case a perfectly appropriate question - and I am lost in the reality of autism as an entity. What it means to her, what it means to our family, what it means to our extended family, what it means to our friends, what it means to the stranger who is seated next to us, what it means for her future...and so forth and so on.
When it comes to RJC, I am often asked about the practical issues of having a gal diagnosed with autism; the worry about where she'll live when I'm gone, the complications of figuring out if she's sick or what happened during the day when we were not around, the difficulty in keeping her safe, the craziness of trying to take her on vacation or to the dentist. I can answer these questions pretty easily and factually.
These other issues though. They are emotionally painful.
The Concept of "Nevers."
For example:
She will never go to a concert or movie with friends.
She will never have a driver's license.
She will never travel on her own
She will never go to college.
She will never have a date.
She will never buy a house or rent an apartment.
She will never hold a full-time job independently.
She will never be able to share her inner most thoughts.
She will never get married.
She will never have children.
She will never have grandchildren.
Please, if you are thinking any of the following things, do not say them to me:
"G-d doesn't give you more than you can handle" OR "Everything has a reason."
"She won't realize what she's missing."
"Lots of people don't have these experiences."
"My typical child won't (fill in the blank) either."
For me, these are not helpful to hear. Instead, just wait me out because shortly everything will feel different. How? Why? Here it is...
When one of these "Nevers" comes up, it sends me into a tailspin for a day or so. I feel sad, I feel resentful. Not at RJC but at Autism. Then I feel angry and guilty that I feel this way because Autism is a part of RJC. Then I manage to move on.
Because inevitably The Concept of "Always" appears.
She will always seek out mom, dad, or NMC (not necessarily always in that order).
She will always be happy when her iPad is working.
She will always enjoy planning outings to her favorite places.
She will always love her calendar.
But here are the big winners:
She will always see people exactly as they are and accept them exactly as they are (unless they are mean in which case she will be smart enough to stay away).
She will always be authentic.
She will always forgive.
So there you have it. The Concept of "Never" vs. the Concept of "Always." In my day-to-day life I need to focus on the concept of "always." Yet the reality of life is that every once in a while the concept of "Never" is going to creep in and it's not going to be pretty.
In a relatively short time though, RJC will do something or say something that brings everything back around to her loving, authentic way. Everything and everyone, including me. She may hop into bed with me in the morning and hold my hand. She may ask to call NMC to be sure she is really coming over to take her someplace. She may sing along to Barney (in English, Hebrew, or Spanish), she may quiz us on dates that we are supposed to take her someplace, or she may want to "help" in the kitchen and then prompt us to tell her she did a great job.
All of those things are so much of who RJC is that they make me smile. Sometimes they make me laugh. Sometimes they make me feel the need to share who she is with the world because truly, most people are not like RJC. Yet if they were, I have no doubt the world would be a better place.
The Concept of "Always"...always wins.
Hubby and I are planning a trip to Florida and RJC will be coming along as well. Our very patient, loving and generous cousins have offered to have all of us stay with them.
There's just one teeny tiny issue:
There is an alligator that pretty much lives outside their place.
An alligator.
Now over the years we have told RJC some important rules. The rule: "No riding the dog" was especially important when she was smaller and larger dogs were looking mighty fun to hop on. We needed to say it as a reminder if we were going to somebody's house or we were out and about in the community and we spotted a large dog. "No riding the dog" was a part of our repertoire. Still, we had never considered that we would need to tell her "No riding the alligator."
The big problem is that we are not absolutely sure that she would care what we tell her once she sees the thing. She really, really likes alligators. In fact, any big sort of creature is right up her alley. Like alligators. So sadly, we are not staying with these most beloved cousins but instead we have rented a condo.
I kid you not.
RJC has always had very good motor skills and no comprehension of danger. When she was young, she also did not have the receptive language skills to understand rules. This is a dangerous combination. We used a toddler harness for a ridiculously long time. As she has grown in size, I thank goodness she has also gained language skills so we can remind her about the safety rules. While her increased language skills have given us some peace of mind, when something is really enticing to her...like an alligator...we cannot count on her to remember or care about the rule.
So if you happen to meet up with us while we are on vacation and you happen to hear one of us say to RJC, "Remember. No riding the alligator." We aren't kidding.
