When Do Parents Love the whole Autistic Kid?

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I think this is the only forum where I can unload my anger and heartbreak. A close friend died, leaving her adult prodoundly autistic son. I love her son and laugh at his funny stimmy reactions. I truly enjoy him. He's a lot of work, as my daughter is, but, after awhile I think, as a parent, it seems that you'd learn to love and accept the whole autistic child and find some fun in the stimminess.

But at the wake, a bunch of gloomy parents who all had adult autistic kids, mostly talked about how much everyone wanted autism cured. I should have passes out medals for martyrdom. That's what they all wanted. There wasn't an atmosphere of love and acceptance for how our lives turned out. No mention of being together untied by love for our needy kids and us becoming friends because of all having autistic kids. It was being bonded by wishing for the cure. It was so wrong. I felt so out of place.

I am lucky to have lost all expectations from NTs.

i get aggravated and panicked and irritated and resentful about various aspects of being mum, and at the classic AS "stupidities"/blocks in amongst the intelligence, of my 8 year old son, tho things are already better for having found name and words for him and me, AS/PDD and Aspie resp.
I think i had already rationalised a lot of my difficulties into expressions of freedom and alternative ways of living. I had already accepted i wasn't in the rat race anymore. So i wasn't thinking like that about my son .
He is the only person in the world that i can cuddle, and he likes to so that's good. I don't feel bitter, or alarmed , ( i have done in the past, and may do in the future, but not right now) about his having 4 year old social skills and personal care, along with broken language etc.
My main problem is being a mother at all.
And as AS runs so often in families, and as AS women so often have trouble with parenthood i wonder whether it isn't unacknowledged mothering problems/difficulties ( of unacknowledged autistic spectrum mothers/parents) that are being expressed at gatherings like that.
Apparently this AS in the family issue is almost taboo amongst the cure-groups.

I've been an incompetent mother in a lot of ways because of my own autistic related anxiety and, sometimes not realizing I need to do something like take better care of my daughter's teeth. For that, I shall be forever feeling guilty but it seems so natural to love your child's quirks, even while you're realizing that having a child so disabled is life changing.

My closest friends are the ones who gave up thinking about how awful life is with our autstic kids and now we're just all a playfully eccentric bunch but, unfortunately they weren't the ones at the wake. Maybe a lot of parents are still not wanting to love their kids as much as they could because they don't want it to hurt so much when their kids eventually get sent to the dog pound.

Becky:

One's kid is one's kid. With a severely autistic child, there are people who try to help, and sometimes that help is outside the home, but it's not the dog pound. Sometimes the so-called "living situations" are awful, you're right, but not all of them are. And unless you do something yourself (I'm not speakig personally about you) to make the state think that you're not fit to have the kid, they aren't going to take the kid away.

I rather suspect, that in the long run, they're going to find that there is no cure for autism, because it's not a disease. How are you going to cure something that's a set of behavior patterns. And in "curing something" what kind of other damage are you going to do.

I admit that if I had a kid who couldn't communicate at all, I might want to get some help. If drugs helped (and often they don't) then I'd go that route. If there was some other sort of "treatment" that changed the behavior patterns without destroying the kid, I might be interested. But there are a lot of autistic people who do pretty well.

Funerals are disturbing, but it sounds to me very much like you have some other issues in mind.

As far as what you did or didn't give your kid, were you financially able to take care of your daughter's teeth? If you weren't, well, some of us aren't. And if there's something else bothering you that deeply, you ought to try to think about what it is, and see if there is something positive you can do about it.

We need to know more, if you'd care to tell us. If not, that's okay too.

Best,
Beentheredonethat

All I want cured is whatever causes pain. When an autistic client wants to tell me something and can't find the words or means to put it altogether they get frustrated and angry. When they have phobias about new things instead of caution, therefore not enjoying the zoo or outing, I'd like to see that cured. When they blinding take off and run, not knowing or paying attention to what dangers they may run into...that I want cured. Basically whatever cause them pain, I'd like to see cured. Otherwise, I celebrate the quirks and marching to the beat of their own drummer. The saying it like it is or what they see, hey....they make the world a better place.

Paula, you gave one of the BEST explanations of why we as parents would like some change, for the better, for our kids. I really want you to know that you struck a chord with me on this subject.

There are times on this forum where I hear various people on the spectrum express their anger at the parents who would like a "cure" for autism, and I feel so frustrated. If you have a child who is on the spectrum, and you see him struggle in his attempts to make friends, and he is rebuffed, you feel incredible amounts of pain for him, and you wish you could do something to help. When your child gets older and he has a high range of intelligence about something that is one of his "obsessive interests" but nobody will listen to him because he lacks social skills, you feel pain for him. When he gets even older, and he is lonely and unhappy because he hasn't met someone who loves him as much as you do, someone who could spend the rest of their lives with them, you wish that somehow, you could take away his pain.

Do I want to change my son? No! I adore this child! I am accused by his siblings (jokingly, of course) of loving him the most! And why wouldn't I? He's interesting, he's funny, he's innocent (probably the thing I love the most about him) and he's wonderful. He's the most kind person I know. I wouldn't change his personality for anything. But if there was something I could do to help him feel more comfortable in his own skin, yes, I would do it. If HE wanted it.

At the same time, OregonBecky, I understand why you wrote what you did. At some stage one hopes that a parent would accept and love all that comes with autism. I think that acceptance, complete acceptance, comes at different stages for different people. You sound unusually accepting of the situation. Other people want to "fight the system," and may even go to their grave feeling that way. I have to admit to feeling tired, and I know that I don't have as rough a situation as many. I think the exhaustion and frustration comes less from not totally accepting your child and your situation, and more from never really feeling like you're doing the best thing considering the situation. I never feel like I have a handle on what I should be doing. But I can honestly say, now, after many years, that I wouldn't have it any other way, because then I would have missed out on the person that my son is.

Kris

Becky~ I agree. There comes a point within acceptance where you love the quirks and realise that they are a part of your child and what makes your child their unique and wonderful selves. I feel sorry for my son's dad because in discounting his AS he is also discounting the wonderful and quirky person who he is. He is who he is and he is that because of the AS to some extent. I hate the martyr parents who act like life is so horrible because their child is autistic. Get over it! It's not that bad!

But I've been chastised many times that I just don't understand because me and my child are high functioning and I just don't understand the hardships!

My partner's autistic son is fantastic. I love him to bits.