Had someone asked me twenty years ago, “Are you glad your son’s the way he is, I mean, autistic and all?” I’d have thought the person crazy. If she’d followed up with “Well, I’m glad mine is,” I’d have said she was delusional, twisted or had Munchausen by proxy — that syndrome where a parent (usually the mother) makes up or causes a disease in her own child to get attention.
I’ve become that lady, but believe me, I’m not crazy and I don’t have Munchausen. It’s just that parenting has completely changed and humbled me and made me see things I thought impossible.
When I say I’m glad my son’s autistic, I speak only for myself, not for any other parent — not even my husband — at any given stage of their parenting experience. I’m also not speaking for my non-disabled son Andres, whose sibling experience I care about immensely. And I’m certainly not speaking for Diego or any other person with developmental disabilities.
Everyone’s experience is unique and changing.
I’m specifically talking about what Diego and his developmental disability have done for me and how I feel about it all today, which is glad about who Diego is, just as he is.
Diego has forced me to confront my arrogance.
When I was pregnant, I thought about what kind of parent I wanted to be and what I wished for my child. I’d show my son the world and support him in whatever dreams he had. I wished him to be happy and healthy. I’d love him no matter what, just as he was.
Then, as Diego grew older and was diagnosed with autism and intellectual disability, I just focused on “fixing” him, literally. I wanted to get rid of his autism and cognitive differences, for Diego to earn a high school degree, go to college, and achieve physical and financial independence.
For too long, I didn’t accept he was autistic, much less intellectually disabled. I hid it from others too.
Whatever happened to celebrating and loving my son just the way he was? How about just wanting him to be happy?
I was so full of it!
I actually had the arrogance to think I knew exactly what was best for Diego and that I would make it happen. I didn’t stop to think that a meaningful life didn’t require following the same path I’d taken and my siblings’ and friends’ children were on.
Diego helped open my mind, and to re-evaluate whether happiness should be life’s end.
Diego has grounded me.
I know I’d likely have a fulfilling job had Diego been “normal” but it certainly wouldn’t be in special education.
If I could choose one superpower, it would be to know what my life would’ve been like given alternative choices and scenarios. Since that’s not the case, I can only speculate and my guess is I would’ve ended up doing something more “glamorous” than what I do professionally because, as I said before, I was full of it.
Diego has given me access to a different kind of mind.
Diego’s beyond unique. He’s incorruptible, 100% authentic. He has a code and doesn’t divert from it. It includes, for instance, not saying anything negative about others, and telling people to “talk about something else” when he hears them criticizing others.
It doesn’t occur to Diego that you need to learn anything to a specific level within a given time frame. You just find a reason to keep trying and learning.
Diego’s mind notes differences but he doesn’t judge them as good, bad, better, worse, preferred or dispreferred. He’ll say, “Rob doesn’t walk; he has a wheelchair,” or “Jessie has a voice box to talk” because that’s their reality, and there’s no pity or admiration in either observation.
He profiles with no intention to attach any negative stereotype, only to know how he can engage the person better by, for example, saying “Hola” or “Ciao” instead of “Hello”.
Diego’s mind records everything that happens any given year, which is pretty cool. Off the top of his head, he can list people he met, movies released, places he visited, and any family member who died, got married or was born in any given year. He also has a great visual memory and never loses his child-like interest in what he loves.
I used to constantly be thinking about how to turn Diego’s relative strengths into gainful employment. Diego has taught me that not everyone must have a paying job to contribute to society or feel fulfilled.
Not every ability needs to be monetized!
The complexity of any human mind is unfathomable. It’s just that this complexity becomes evident when you witness a unique mind like Diego’s. It’s not special in that it operates better or worse than other minds. It’s just that it operates mighty differently because of his developmental disability.
Diego has shown me the human potential for love.
This is, if not Diego’s gift to the world, at least his marvelous gift to me and our large extended family. Diego is a bundle of love. He knows humans are capable of doing bad things and is fascinated by villains in legends and Disney movies, but he’s incapable of evil.
Plus he’s disarmingly affectionate and says the kindest things. He strokes your arm when you’re sad, tells you he’ll take care of you when you’re old, and instantly forgives you. Any haughtiness and grandiosity my husband and I have he has managed to soften.
Parents worry a lot about what will happen to their disabled children when they’re gone. I worry a bit too, and I do plan for Diego in a way I never would if he wasn’t disabled. But Diego has taught me I shouldn’t expect to know what will be good for him in a decade or two. I must focus on the present and what brings Diego joy and fulfillment now.
You know how sometimes you read about people who’ve lost a limb and who say they wouldn’t change a thing? Or people who’ve lost their fortune and later say that’s the best thing that ever happened to them? It sounds crazy but these experiences, though not universal of course, can be true. It has been true for me when it comes to Diego.
I’m aware it’s an illogical assertion to say I’m glad Diego’s just the way he is (developmental disability included) since I’d love Diego just as much if he’d been born normal. I know so not only in theory but because my second son, Andres, isn’t autistic and I love him infinitely too. I’m glad he’s not autistic! Like I said, it makes no sense.
I will admit that getting over (to the extent that I have) the hangups and arrogance and BS that having Diego brought to the fore was a torturous journey.
Also, some days Diego drives me nuts with his constant talking on the same topics. Sometimes I don’t feel like helping him brush his teeth and shave, and it frustrates me to no end that we can’t get rid of his toenail fungus because he’ll put on his socks on wet feet. I also feel bad telling him he can’t get a driver’s license and will need to wait for self-driving cars to come out.
The difficulties are real, and just like an amputee wouldn’t wish an amputation on others, I don’t wish disability on anyone either.
Still, I’m sincere when I say I feel equally lucky about the children I have. And I marvel at the fact I’ve come to feel this way.