I have had people say lots of kind, well meaning, and interesting things to me about our daughter.
"I don't know how you do it."
"I could never..."
"She has only gotten this far because of you."
"You're a Saint."
I never know what to say in response to any of these so I usually stutter around for a "thank you" because I am well aware that what was said is offered as a compliment and I appreciate that.
But here is what I think in my head:
You could do it because there is no option.
Never say never. My mom told me that many times, and though she never said it in this context, it is fitting.
She has gotten this far because of HER. Yes, we were helpful, as were her many teachers and various other professionals, our family members who have never wavered in offering encouragement and support, and our friends who have listened to me vent and cheered her on. Ultimately, though it has been all her - who she is - resilient, stubborn, loud, smart, determined.
I am no Saint. Not even close. I lose my mind some days. I do not sleep well and I struggle with anxiety, pretty much on a daily basis. I mutter under my breath, I vent to close friends, I cry and yell to my husband, and I have many days where I have doubts about what we are doing or should be doing.
Our everyday life is complicated for sure and like all families we trudge through and hope for the best. We have issues with the mundane, everyday events. Going places takes a great deal of planning, talking over the "ifs" - if this happens what should we do and if that happens what should we do. Illness and injuries, even small ones, are complicated. We are not always sure what the issue is when our gal does not feel well. We are not always sure how she has gotten hurt - we only see the result - a black and blue mark or an infection that has appeared. We are not always sure why she is yelling or hitting herself and we are definitely not always sure how to help.
A few evenings ago we were having a "regular" evening. My husband and I were watching a show with the subtitles on because our gal was on her iPad listening to her videos on YouTube. Many years ago we made the choice to take the computer out of her room and give her an iPad so that she would hang out with us in the living room. We did not want her be isolated. Unfortunately, the headphone use was an issue over time and they because a tactile problem. We have tried just about every type of headphone but she is miserable. So this is how we adjust. Not ideal but it works for us.
In any case, it was time to give her some meds and get her into the shower. That means stopping our show while I get up to get the meds, then stopping again to be sure she gets in the shower. Then stopping again to help brush and dry her hair. Each time I would come back to the couch, say "sorry" and we would continue watching. The third time I came back and said "sorry" my husband turned to me and said, "You know you never need to apologize for taking care of our daughter, right?"
WHOA. That was a revelation. I had not even realized I was doing it. I thought about it for a bit and it occurred to me that I often apologize for our daughter in many different situations - or for our own actions concerning our daughter - and perhaps I should stop (well, unless she dumps water on somebody or is incredibly disruptive, both of which she has done). She is who she is. We are who we are. Our family is what it is because we have made carefully thought out choices and we do not need to apologize for those choices. For sure, easier said than done. It is a habit.
Just the other day I took her to get a manicure. First time in years. We went to a place we have never been before and I was definitely feeling nervous. I did call ahead and gave a general heads up but did not go into much detail - just said I was not sure how it would go. The woman did not sound at all concerned so off we went. There was a tv on and amazingly it had exactly the type of show she likes to watch - a nature show all about large animals in the wild. Then she started fussing. Loudly. "Take off my bra?" "Mommy will count to three and take off my bra?" "All done bra!" I answered as usual, "When we get home" and tried to get her to focus on the tv show but to no avail. Of course the other customers had no idea what the underlying issue was and there was literally no way they were not hearing her loud declarations (and to their great credit, nobody stared or glared either). In the past I would apologize and share her autism diagnosis. This time I shrugged and made a blanket statement, "Not much in our home is a secret." That broke the ice and the other customers were quite good natured, even amused, commenting that they totally agreed with her.
It was an interesting experience. Nobody was upset, nobody asked questions, nobody stared or glared because of the constant and repetitive chatter. In fact, it was a way for me to connect RJC to the group - something I never considered. It was a good start to the "no more apologies" approach!
Why it took 29 years for me to get to this point...I have no idea. I am not sure this is going to be life changing in any significant way, but it does make me feel as though I am giving RJC a bit more dignity and respect for who she is. That is important to all of us as a family but mostly I feel that it is important for her. We always make the effort to keep her happy and keep her safe. Now we are finding a small way to simply let her be her. Seems like the right thing to do.
