Each week, we’re mostly talking about my perspective. Even when the post seems entirely descriptive, my actions as discussed are certainly displaying a silent narrative of sorts based on what I prioritize and do. My perspective, though, is not the only one in the room.

I am going to quote again in this post from a section of Andrew Solomon’s TEDMED talk “Love, no matter what” because it very concisely fleshes out a differing perspective on some of the supports families such as ours try and provide to their Autistic loved one. I will be putting his remarks in italics, as within the comment he is also quoting another individual and I want to be clear about what are Mr. Solomon’s words and what are Mr. Sinclair’s. Around the 13^th minute, Mr. Solomon says this:

“Jim Sinclair, a prominent autism activist, said, ‘When parents say ‘I wish my child did not have autism,’ what they’re really saying is ‘I wish the child I have did not exist and I had a different, non-autistic child instead.’ Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure- that your fondest wish for us is that someday we will cease to be and strangers you can love will move in behind our faces.’ It’s a very extreme point of view, but it points to the reality that people engage with the life they have and they don’t want to be cured or changed or eliminated. They want to be whoever it is that they’ve come to be.”

I believe it is important to be aware of that perspective- and in truth Tony never would have chosen to undergo any of the therapy programs we’ve done over the years on his own, so I’m certain on some levels he could relate to it. However, unless an individual is capable of complete independence, some form of compromise to the desires of others is necessary. The moment my involvement is required to clean something up, provide care, ensure safety, or get something done, I get a say in what skills are encouraged because it’s my life too that is now involved. So, I try to make sure everything I do is not about changing his personality or interests, but about building skills that decrease the amount of involvement from others he will need in the future.

And, even for “typically” functioning adults, we are not in fact so independent as sometimes we tell ourselves. I am going to reach back in time to another of the authors I have recommended and quote Patricia Madson, “We are not on the stage alone. We are literally surrounded by gifts and by a chain of givers who are responsible for providing them.” She went on to describe an assignment she had been given, “to focus on three questions. What had I received from others during my life? What had I given back to them? What trouble or bother had I caused them?”

In reflecting upon the results of this task, she noted that “what I discovered astounded me- a world that had been there, but formerly unseen- a place where I was receiving far more than I had been giving; in short, a world of support. I walked into a brand-new movie of my life, one in which I wasn’t the star, but one of many players. To see my story from the perspective of the others in my life gave it new meaning…We need to see the contributions of others in bold relief and to recognize our interdependence.”

His Holiness the Dalai Lama agrees, and says “you need to value cause and effect.” Which means, as Dr. Temple Grandin (a highly accomplished individual and author, who was diagnosed with Autism as young child) so succinctly puts it, “Sometimes you have to do things other people want to do…” Yep. Indeed, we all do whether we really want to at the time or not.

I love both of my children fiercely. I don’t care about whether Tony flaps, lines things up, or wants a social life of any kind. I do care about whether or not he can successfully go into everyday public environments, tolerate simple medical exams, communicate what he needs with his speech device, and perform some basic self-care tasks. That seems like a small list, but with the extent of his past and current deficits the undertaking is massively time-consuming to produce the gains we have had.

The level of preparation I discussed in last week’s post for his latest dental cleaning goes into the development of pretty much every skill or area where tolerance needs to improve for his own welfare.

Every one of these successes we have in building skills decreases the future involvement needed by myself or others. And, while Tony may not have appreciated many of these things at the time, some of what he’s gained, like tolerance of some public environments and sensory stimuli, has dramatically improved his overall happiness and comfort in the only world he has to live in.

Certainly I am also hoping we can help him gain many more life skills. Not because I want a different child, but because I want him to have the best life he can have when I am no longer here to be providing love and support. However, sometimes to him it has probably felt like the way he wanted to be wasn’t “good enough.” Living in a social world will prune each of us in ways that are needful to function as more equal partners in our “interdependence.”

I know that acknowledging the other perspectives in the room means also recognizing other “elephants” of controversy that could be whipped up into rampaging if not handled with great respect. Not everyone in similar circumstances would choose to do as I have done, nor would everyone prioritize or value the same outcomes. And I certainly am willing to look at things in a less traditional light to help Tony gain the skills we are working on, and not everyone feels comfortable doing some of the things I try. There are even those who see little or no value in providing the level of support required to develop skills in a child with so many deficits- I firmly and politely assert that my son is and always will be worth it to us, and that every skill he gets reduces the cost of services he will need for the rest of his potentially very long life.

But none of the individuals holding those perspectives is one of Tony’s parents, nor are they our little man himself. As his mom, I will continue to do the best I can to honor his perspective while striking a necessary balance between that, the needs of other family members, and the abilities I know he will require to navigate his future.