Monday, October 24, 2011

In Which I Bitch and Moan a Little

I was leafing through an old women's magazine today while waiting for an appointment, and I found an interview with the actress Holly Robinson Peete, in which she contended that parenting a child with autism is like dealing with the problems of a typical child, only magnified by ten. That sounded like a high factor to me; after all, a mother-of-many at the Latin Mass remarked once about my son: "He's as much work as four or five would be!" (which I took as my cue to never go back).

Yes, it is hard work. Some days -- today, for instance -- are nothing but tears, and I feel locked inside of a world that's impossible to describe to anyone.  I'm sure this is compounded by my loneliness and isolation and sense of being in exile here.  Some days I wonder if anyone will ever understand him, or understand me, without making erroneous assumptions and faulty judgments about us.  And my son is high-functioning, intensely verbal, noticeably gifted, and in love with learning, so I probably have no right to my tears, when so many other mothers spend all their time trying to enter and topple the locked fortresses in which their non-verbal children dwell. I don't want to be too grandiose.  In spite of our struggles and pain, my wonderful son with autism is just right for me, and I pray that I'll be just right for him.

Gerard Nadal believes that the burgeoning number of autistic children in our midst is a gift from God, and that God intends to use this "epidemic" to teach us how to truly love. It may be our only chance.

16 comments:

ElizabethK said...

That's a wonderful, if sobering article. And don;t underestimate the power of feelings of exile to derail you--when I moved back to L.A. after living in the Pacific Northwest, I was profoundly lonely and depressed, in spite of all the good things in my life. We don't always talk about the role of place in our lives, but it's very important, and moving can feel almost like a little death, sometimes. Praying for you!

Melanie B said...

When I first moved to New England I don't think I realized the depths of my loneliness and sense of exile. I so very much wanted to be here, after all. It was a dream come true. Only after I'd finished grad school and found myself in a holding pattern while I tried to figure out what I wanted to do with my life did I really admit the extent of my loneliness, which was compounded by the sense of being a foreigner in a strange land, surrounded by an alien culture. Texan culture and sensibilities are so different. Everything truly felt like the stereotype: cold and unwelcoming.

It really wasn't until I was married and thus had a family that I started to feel a sense of belonging. I still often feel very isolated. Somehow more so when spending time with my in-laws because they are family and yet not family too, with foreign ways of interaction that blindside me and subtexts I'm still not adept at reading.

Mostly I'm too busy to notice these days; but sometimes it creeps up on me.
It takes a long time for a community to feel like home.


Oh and I've been pondering that Nadal article for a while now. It really is something to consider, isn't i?

Enbrethiliel said...

+JMJ+

I wish I could be of more comfort, Pentimento, but I'm far away from you, too--and very socially unaware. There might be another lonely exile living in my own building, and I'd never know. How we all fly under each other's radar!

Jan said...

The woman's comment about your son made me sad; your reaction was perfect. We all need more grace.

J.C. said...

I've been lurking here for some time...but I just wanted to duck in and apologize that in the midst of the pain you've been experiencing from other crosses in your life, someone, specifically someone who attends the Latin Mass, would make such a tactless comment about your son. I say this as someone who attends the Latin Mass exclusively. I just hurt my heart to see you post this last night. My husband and I talk about this often. We just don't know why so many "Trads" have this particularly uncharitable trait of intolerance toward children in the context of the Mass. Thank God for autistic children and unruly children who, through the grace of God, teach us lessons in humility and compassion and charity, whether we are willing students or not. God bless you. Will be sending some prayers your way...

Pentimento said...

Thanks for the prayers and kind words, friends.

I felt incredibly energized after my trip to New York -- especially since I was engaged in my profession with beloved colleagues. I'm convinced that I need to keep at it in order to avoid falling apart, like a badly-repaired machine. I just picked up a book proposal again (academic musicology) that I was asked for more than two years ago. Somehow the singing and writing make everything else easier to handle.

Pentimento said...

"Thank God for autistic children and unruly children who, through the grace of God, teach us lessons in humility and compassion and charity, whether we are willing students or not."

This made me cry, J.C. Thank you for your compassion and your prayers.

And something I've always wondered: How do those TLM moms of many get their children to behave so impeccably at Mass?

Melanie B said...

About the mom of many. I wasn't there so have no idea about her tone and mannerism; but the words themselves could have been meant in a way to show sympathy. That's how I took them the first time I read this and was a bit surprised at your reaction of never going back. Then I realized that it must have been the way she said it because the words seemed innocuous to me. So I'm wondering if you might have misunderstood her intent. I tend so be prone to saying clueless things without realizing they may hit a sore spot. Perhaps she's just unaware of how she comes across?

Pentimento said...

Melanie, actually I'm sure you're right. I don't think she meant it disparagingly. However, what I took from it was a keen sense of embarrassment, as well as the feeling that it was disruptive to others to have my son there.

J.C. said...

Not being a mother-of-many (love that moniker!), I can only speculate. We have 3 girls--14, 9, and 3 years old. Through no fault of our own, our 3 year old is consistently well-behaved at Mass. But I assure you it wasn't always this way with my other two. When we started to attend the TLM exclusively about 7 years ago, I frequently left Mass humiliated and in tears. My husband and I have actually discussed this topic extensively, and it might be somewhat controversial to say (and I hope I don't offend anyone...cringe), but we think that some of this unwarranted good behavior is rooted in the austerity and reverence of TLM. I'm sure that a Novus Ordo Mass with a similar atmosphere would yield the same results, but the truth is that generally they differ greatly. My three-year old is no more or less naturally obedient or placid than my other two were at this age, but I think the fact that she's been conditioned by her surroundings since birth makes makes her behave differently. I think that especially for young children, the Latin Mass has an other-worldly quality and therefore elicits a compatible behavior. As they grow older, I think they learn the rational reasons behind proper behavior at Mass and eventually they become accustomed to a certain common standard. Otherwise, I suspect those mothers-of-many administer sudafed to their broods before every Mass. :) And, funny enough, the first time I heard someone joke about this, it came from a TLM mother of 15 kids! She was joking...I'm sure!

Pentimento said...

J.C., my husband always asserted the same thing about the supernatural effect on children of the TLM. I guess it doesn't work with children on the spectrum.

ex-new yorker said...

We attended a parish which had a Mass with Latin, an ad orientem priest and the type of music you'd expect with that -- not TLM, but definitely going for that "flavor." When we attended that Mass we did notice a huge improvement in our spectrum kid's behavior. I don't remember how many times we went to that one as it required getting going earlier than usual, so I'm not sure if it had to do with his tendency to be more attentive/cooperative with new things even if outside his usual areas of interest (this may be one of his less "spectrum" characteristics but I still don't always get what constitutes the essence of being on the spectrum).

The parents have been going to Mass separately (at a different parish with more OCP-ish music) for a while because physical reasons now make it too tough for us to manage all the kids' behavior there at once. My husband reported feeling stared at by a woman behind them this past Sunday, who even moved away in her pew, while our autie was better behaved than usual -- he only tried to lie down once and was apparently "stimming" by getting up close next to my husband. It's hard for me to remember a time when I might have sat there thinking, "That kid is not young enough to be doing that! Why don't his parents do anything about him acting that way at Mass?" I still consider myself quite attentive to kids' potentially distracting behavior within the Mass, but my standards have certainly adjusted with more kids and one on the spectrum. I remember one time when the autie actually hit or tried to hit my husband a couple of times and I could see this lady behind us clearly trying to communicate with her eyes to me that we needed to do something. No, not something that should go unaddressed and certainly not allowed to continue within the Mass if it had, but honestly, I just remember feeling kind of boiling with anger that she apparently assumed she was more concerned about our situation than we were based on this tiny snippet of our lives, and that addressing *her* concern was something I should be attending to. (It wasn't exactly a physically brutal assault by our 5-or-6-year-old on my husband, and we didn't just let "little slaps" go either, but it was an in-the-moment trying to manage as best we could issue.)

Clare Krishan said...

I too agree with Dr. Nadal, tho' my experience is only with extended family on the spectrum (Aspies PDD etc).

I found terrific insight from JPII anthropology see Chart 1: A Christian view of the Person on p150 of this book
http://www.amazon.com/gp/reader/0813209412 [search inside for "Chart 1")
The social awkwardness of an autistic person does not detract from their original solitude, the mystery of each unique person's incommunicability, in fact it makes this truth about human persons all the more obvious to those around him. His very existence becomes a significant gift. Entering into relationship strips us of our own pretentions and makes us reexamine how dependent we all are on grace, to love and be loved. For only by reflecting (p151) do we see ourselves as God sees us!
Triangulating a particular predicament may provide a pointer to what sense in of relationship is underdeveloped?
Those of us gifted with a particular appreciation (I love this or that) overlook that reciprocity is not a given (no I do not care for that thankyou), God surprises us, and we learn humility. This communio personarum lies at the root of all human endeavors, but I think the autistic debility amplifies it if you will, we have to make a greater effort to cross that threshold of disinterested self-gift to assist "the other" indeed that is the calling of every human person, to sacrifice self will to permit participation via selfless will. In choral performances, your professional training disciplined your ego to allow the music to lead, mothering is a new way to use your voice in harmony with his father's: you both are the music your son learns to read, to sing the melody God has in mind for him. In Genesis the name for man is isch, for woman isch'ah - she is the "breath of heaven" to his he, the expression of full-maleness is fe-maleness, the voice is voiceless until it come to recognizes its muse. How blessed your son is with you and your husband as his parents!

Pentimento said...

Thank you, Clare, I really needed to read that!

eaucoin said...

As an adult on the spectrum with faith in God, I believe that my role as a fractured human is to be a channel of God's grace. When my wiring creates problems, people have a choice to be merciful to me and God will show that mercy to them. But, the Holy Spirit has assured me that, especially if someone is mean to me, if I am willing to ask God to forgive them, then God will be infinitely more generous with them. If somebody is really ignorant, I feel like God has led them to me (like a sting operation) and I know what to do. You parents with children on the spectrum, when someone is behaving badly around your child or just intolerant, think of them as somebody who needs their mother (the Blessed Virgin) right now and say a Hail Mary on their behalf. Here's another thought, the characteristics and manifestations of autism are so varied that this diagnosis is described as a spectrum. So I can see George Nadal's point. A spectrum of color is what God used to show Noah that he wouldn't destroy the world because of sinners. What if our autism spectrum is the human rainbow that reminds God of His promise.

Pentimento said...

Thanks for these beautiful insights, Eaucoin. I just found out that our diocese's office of faith formation has a branch dedicated to special needs, so I'm going to investigate.