Editor’s Note: Donna Cohen blogs at Autism Almost 21 about raising a young adult daughter (RJC) with autism. We are grateful that she’s sharing this blog with The New Normal.
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.”
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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.
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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.
Donna Cohen is the mother of two daughter, one who is diagnosed with autism. She is an educator, advocate and whatever else she needs to be so that her family is happy and healthy!
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