Had someone asked me twenty years ago, āAre you glad your son’s the way he is, I mean, autistic and all?ā Iād have thought the person crazy. If sheād followed up with āWell, Iām glad mine is,ā Iād have said she was delusional, twisted or had Munchausen by proxy ā that syndrome where a parent (usually the mother) makes up or causes a disease in her own child to get attention.
Iāve become that lady, but believe me, Iām not crazy and I donāt have Munchausen.Ā Itās just that parenting has completely changed and humbled me and made me see things I thought impossible.
When I say Iām glad my sonās autistic, I speak only for myself, not for any other parent ā not even my husband ā at any given stage of their parenting experience. Iām also not speaking for my non-disabled son Andres, whose sibling experience I care about immensely. And Iām certainly not speaking for Diego or any other person with developmental disabilities.
Everyoneās experience is unique and changing.
Iām 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. Iād show my son the world and support him in whatever dreams he had. I wished him to be happy and healthy. Iād 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 āfixingā him, literally.Ā 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 didnāt 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 didnāt stop to think that a meaningful life didnāt require following the same path Iād taken and my siblingsā and friendsā children were on.
Diego helped open my mind, and to re-evaluate whether happiness should be lifeās end.
Diego has grounded me.
I know Iād likely have a fulfilling job had Diego been ānormalā but it certainly wouldnāt be in special education.
If I could choose one superpower, it would be to know what my life wouldāve been like given alternative choices and scenarios. Since thatās not the case, I can only speculate and my guess is I wouldāve ended up doing something more āglamorousā 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. Heās incorruptible, 100% authentic. He has a code and doesnāt divert from it. It includes, for instance, not saying anything negative about others, and telling people to ātalk about something elseā when he hears them criticizing others.
It doesnāt 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.
Diegoās mind notes differences but he doesnāt judge them as good, bad, better, worse, preferred or dispreferred. Heāll say, āRob doesnāt walk; he has a wheelchair,ā or āJessie has a voice box to talkā because thatās their reality, and thereās 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 āHolaā or āCiaoā instead of āHelloā.
Diegoās 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 Diegoās 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. Itās just that this complexity becomes evident when you witness a unique mind like Diegoās. Itās not special in that it operates better or worse than other minds. Itās just that it operates mighty differently because of his developmental disability.
Diego has shown me the human potential for love.
This is, if not Diegoās 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 heās disarmingly affectionate and says the kindest things. He strokes your arm when youāre sad, tells you heāll take care of you when youāre old, and instantly forgives you. Any haughtiness and grandiosity my husband and I have he has managed to soften.
Final thoughts
Parents worry a lot about what will happen to their disabled children when theyāre gone. I worry a bit too, and I do plan for Diego in a way I never would if he wasnāt disabled. But Diego has taught me I shouldnāt 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 whoāve lost a limb and who say they wouldnāt change a thing? Or people whoāve lost their fortune and later say thatās 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.
Iām aware itās an illogical assertion to say I’m glad Diego’s just the way he is (developmental disability included) since Iād love Diego just as much if heād been born normal. I know so not only in theory but because my second son, Andres, isnāt autistic and I love him infinitely too. Iām glad heās 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 donāt feel like helping him brush his teeth and shave, and it frustrates me to no end that we canāt get rid of his toenail fungus because heāll put on his socks on wet feet. I also feel bad telling him he canāt get a driverās license and will need to wait for self-driving cars to come out.
The difficulties are real, andĀ just like an amputee wouldnātĀ wishĀ an amputation on others, I donātĀ wishĀ disability on anyone either.
Still, Iām sincere when I say I feel equally lucky about the children I have. And I marvel at the fact Iāve come to feel this way.