Unexpected Gold
Autism alters lives, but parents feel “blessed”, reports an article about a family in McAllen, Texas. Patrick and Sylvia Hamilton’s son Michael is 23. While they worry—as many, and perhaps all, of us do—about resources and opportunities as children get older, the Hamiltons have no regrets.
“Special children are born into special families,” Sylvia said. “We’re highly blessed.”
And special families, like the Hamiltons, do a lot to help their children with disabilities long into their adult years.
The constant need for care changes the course of all of their lives.
The scope of that impact varies with the severity of the disability. Many with disabilities are able to function on their own in society; others need more support from their families.
Patrick spends countless hours with his son, and says he truly enjoys his company.
“He’s kind of like my best friend,” Patrick said. “I don’t know what I’d do without him. He’s my partner. He’s who I hang out with.
“We go fishing over at the Island and catch whiting. We ride bikes together. He likes to throw the Frisbee.”
The parent of a 15-year-old severly autistic daughter, Scot Sea, writes this about the “extreme reality” that he lives with, in which
…… the daily routine of his household [is] “just the same scene from the same interminable clip on the late show from hell” …… [he] has nothing but contempt for those “New Age pests, overdosed on media mythology,” who tell him that being the parent of an autistic child is a blessing. Nonetheless — in isolation, rage and despair, and with no hope in sight — he perseveres in taking care of his daughter.
Sea’s essay appears in An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey; the book is reviewed in the February 18th New York Times Book Review.
For myself, I’d be faster to say that being Charlie’s mother has been a blessing, an unexpected and rich gift that I’ve not always known how to hang on to. Yes, I’ve been isolated, and felt rage and despair. And, in many ways, I take issue at being told that “Charlie’s a blessing”—-these sorts of words are easy to say, but they’re just words, and life with Charlie is not always, or often, an easy street (not for him, for sure). I do know, and my husband Jim believes this too, that life with Charlie is just too good to miss out on. There’s mud and mess you walk in and then one day you stumble, and your sole feels a lump: Unexpected gold.
Tags: asd, asperger, autism, blessing, gold, Parenting, pdd-nos, Religion, saints
9 opinions for Unexpected Gold
Emily
Feb 18, 2008 at 2:38 pm
I wish Scot were not isolated. That has to be a huge part of his struggle. Even for parents of straight-up neurotypical children, isolation can be hell. I can’t imagine what it would be like with a severely autistic child, having no recourse to take a break, get time for yourself, be away. We all need that, no matter what the circumstances. I also, of course, take issue with his characterization of parents who are OK with the way things are as “New Age pests overdosed on media mythology.” Many of the people I know who are OK with the way things are arrived at that conclusion on their own, no media involved. How could the “media” have been involved for many of them when it was only recently that the “media” *got* involved?
My personal philosophy is to avoid telling other parents how to live their lives with their children or that they *should* live their lives a certain way, with certain expectations. I’d bristle if someone tried to do that to me and thus cannot inflict that on someone else. Neither, however, do I secretly condescend. Honestly, it’s just none of my damned business if some parents feel that their children would be far better off with amelioration of their symptoms or if some parents are just fine with the way things are. I think the real division between the two comes down to a reliance on a shaky hope for the future vs. a pragmatism driven by immediacy.
Casdok
Feb 18, 2008 at 4:36 pm
There’s mud and mess you walk in and then one day you stumble, and your sole feels a lump: Unexpected gold. I like that!
Kristina Chew, PhD
Feb 18, 2008 at 6:15 pm
About to go out for a walk with Charlie and as it rained yesterday, we’ll be walking in some actual mud, no doubt!
Just the other day I noted to Jim, that I suspect most people we know just can’t even imagine living with a child who, like Charlie, can barely talk—-and it’s not at all what they think, living with a child devoid of the ability to communicate and to express himself. Charlie knows very much how to get his point across—-up to us to figure out how to understand it, and to communicate back to him.
Karen
Feb 18, 2008 at 9:23 pm
Well said, Emily (and Kristina!)
My son is considered “high functioning” so I cannot pretend to know how it feels to have a severely autistic child. For me, though, once I was able to stop obsessing about the future and what it might look like, I was able to just be Pete’s mom and enjoy him, quirks and all. There is no way I would be able to embrace the philosophies of all the incredible people I’ve met on the Hub if I hadn’t come to this conclusion on my own.
It took time, and for me, it is linked to my spirituality. I think when I try to understand why I’m here and what my life is for, it is much easier to parent both of my children to the best of my ability (which, of course, is imperfect!) I wanted children, I have children, and that in itself is a blessing I have to appreciate.
dkmnow
Feb 18, 2008 at 10:52 pm
And, in many ways, I take issue at being told that “Charlie’s a blessing”…
A platitude serves the momentary whims of the one who utters it. On rare occasions, there is real depth of understanding underlying such a platitude. Rarer still is when such depth is readily apparent to the recipient of the utterance. But most often, the platitude carries with it an air of shallowness, which has an unintended trivializing effect. The one who utters it has no idea — and yet the recipient must struggle not to feel insulted.
“You have it so hard, and yet you seem to do so well — you’re such an inspiration!”
*groan*
Ironically, all this evokes yet another trite platitude: “It’s the thought that counts.” But what thought? Am I to be grateful for someone else’s self-mollifying pretense? *sigh*
At this point, I stop and remind myself that this line of questioning is even more alien to the in-group than their perspective is to me…
Just one more area in which the issues we face blend seamlessly into those of racial, ethnic, and other minority/out-group relations.
:-\
theasman
Feb 19, 2008 at 9:47 am
OK
First off, I think this guy scot has been sold some bs himself. Who promised him alife without pain and heartache and stuggle. People come up with all sorts of things how life should be with no facts just pulling it out their arse.
It is just not only other people who defines us but our struggle and pain and our reaction to that pain. Therein you can meaning.
His everyday it seems he describes as groundhog day. What sysiphus by camus. Every cycle of rolling up that stone to the top only having to do it again. and again. Only the recognizing the absurdity , he can find solace. His pain is wholly his. But he has no right to play the matyr as if we should only suffer his pain. We all have our own pain and struggle.
Just to clarify for some people. This doesnt mean not to help him or have services give them”respite” etc.
This is just another objection to the kind of message put forth by autism speaks.
Regan
Feb 19, 2008 at 10:45 am
Just to clarify for some people. This doesnt mean not to help him or have services give them”respite” etc.
——————–
My thought is that things are what you make them, given what you’ve been given, but that said, when you’re burned out, you’re burned out, and that’s not good for anyone.
Cliff
Feb 19, 2008 at 1:56 pm
I agree that on one hand that autism is hardly the simple blessing that it can occasionally be made out to be, from the perspective of both sides (in my case, I’m extremely aware of the pressures both on myself and my parents), regardless of the degree of the diagnosis. But I definitely, at the end of the day, prefer it to the alternative, and value it in many ways, though, again, those statements oversimplify.
Cliff
Becca
Feb 20, 2008 at 10:36 am
For awhile now, I’ve been thinking about this idea of “special kids” being born into “special families” — and the idea that there has to be something special, unique, especially “good” about parents of special needs kids. And I really think this idea is untrue. I don’t think there was anything unique about me or my husband — no special skills — nothing especially “good” about us. But one learns to adapt, to rise to the occasion — maybe we become “special” or maybe what we do is no different than parents of typical kids: adjust our parenting skills/abilities to the needs of our children. I think that putting forth the idea that you have to be somehow a “special person” to raise challenged children might intimidate parents of the newly-diagnosed. I remember when it first become apparent that my son was different, and I had enormous self-doubts — thinking “I’m not cut out to be one of those ’special needs’ parents!” And I had some vague idea/image of some beatific, self-sacrificing woman, endlessly patient and understanding. Which didn’t feel like me.
And maybe this is a stretch — but I seem to see the same phenomenon with parents who find out about their child’s Down syndrome while the child is still in utero. And some of these parents choose to put these children up for adoption, perhaps believing — like I did — that they are not “special” enough to deal with these issues. And I find that very sad.
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