Tuesday, January 12, 2010

autism, acceptance, and anger

A friend of mine posted the following on Facebook:

"Please put this on your status if you know someone (or are related to someone) who has AUTISM. My wish for 2010 is that people will understand that autism is not a disease; people with autism are not looking for a cure but for ACCEPTANCE."

Surprisingly, this has brought up a lot of emotions for me, not the least of which is guilt. More than anything, I want people to accept and love Danny for who he is. I want people to try to understand him, rather than merely judging and then dismissing him. I want him not to be pitied, but valued for who he is, and I want his strengths to be acknowledged, not just his weaknesses.

But, I also want him cured.

I am so hesitant to say this, because I know it is not politically correct. It implies that I don't accept my son for who he is; it says that I want to change him, that perhaps my love for him is conditional. But I don't think that is true. I don't want to change who he is, but I do want to make life easier for him, and if I am to be perfectly honest here, I want to make life easier for me too.

Because watching a child struggle with seemingly easy tasks? Yeah, that sucks.

Being unable to really communicate effectively with your kid is so frustrating.

Watching your son have difficulty making friends is heartbreaking.

And worrying that this may always be the case, that he may have some really lonely times in his life, that he may not be able to connect with others or that he will be ostracized or bullied--well, that's the stuff that keeps me awake at night.

So, if someone were to come along and say they could fix all of that? Well, I don't think I would hesitate to accept their offer.

Bil disagrees. He thinks that to take away the autism and SPD would change who Danny is. It would make him a completely different person, and he is sure we would miss the "old" Danny. Perhaps he is right. But right now, I just can't let go of how much I don't want him to have autism. I just can't seem to see past that. Maybe someday I will reach acceptance, but for the time being, I am angry.

Apparently, those shrinks who came up with the stages of grieving were onto something. I am in the anger stage, and have a feeling I may be here for a while. A long, long while.


JoDee said...

I could not have said it better myself. You have totally hit the nail on the spot when it comes to my feelings. Glad to know that I am not the only one.

Anonymous said...

Patty, I do understand how you feel.

What mother doesn't want to make life easier for their child? Make their struggles go away?

Arriving at acceptance of autism is of course different for every parent, and in some ways I think it depends on our own background.

For example, Charlotte is a lot like me. Should she have difficulty as she gets older connecting with people -well, I get that as I always had trouble making friends in school. Always.

It's easy for me to accept that she's a little bit quirky and is not like most other kids b/c the same could be said of me. I never felt like I fit in socially anywhere. I struggled immensely with wishing I had more friends.

I kinda look it at now like I survived that. Life dramatically improved when I was done with school and in adult environments. And I see it as Charlotte will survive it too -because I did.

It is difficult communicating with Charlotte and that does frustrate me a great deal. So I know what you mean about that. But at the same time - our kids are so smart -they are going to get past this.

Communication isn't always going to be such a struggle. No, they may never be smooth car salesmen, but it's going to get better.

Take your time getting through the process of acceptance. You are Danny's mother for the long haul and your anger about the situation doesn't change how much you love him. It's just part of the journey.

I hope this makes sense.

Logical Libby said...

You have every right to be angry, and every right to wish for a myriad of things. You have to deal with Danny, and his Autism, the best way you know how. It doesn't mean you love him less, or appreciate him less. In fact, it could help you love and appreciate him more.

And anyone who doesn't understand that can go bak to their magical unicorn land where everything is perfect and leave us normal people alone.

Amy Jane said...

Patty, Of course you have every right to feel angry and to wish that Danny's autism and SPD could be taken away from him! After all, you're only human. None of us wants anything to make our child's life more difficult. I have had the though that if Nick were gay, I wouldn't love him any less or think less of him, but I would feel sorry for how that would make his life harder, and I would wish that he weren't gay, only so that he wouldn't have to deal with the accompanying hardships. I can't pretend to know how you feel, but I think that there are some similarities there. I really hesitate to say what I'm about to say next, because I don't want to seem flippant about Danny's autism - I totally get that it's more than just a personality quirk. That being said, though, I'm just going to say it, because I know that you'll understand the spirit behind it: Does it make it any easier for you to think about the fact that almost everyone, even "normal" people, have difficulties in life - quirks that make them hard to get along with, shyness, trouble making friends, trouble learning certain things, flakiness, etc.? I'm not at all trying to compare these things to what Danny's dealing with, but I'm just trying to say that yeah, he's different, but we're all different. Danny's just different in a different way than most. And aside from being different, he's still wonderful and magical! Do you know what I mean? Does that help any? I'm going to shut up now in case it doesn't. Please tell me that I haven't just annoyed the heck out of you. I love you!

Denise said...

i love you, patty

Jenn said...

I found you through Kia's blog.

We are two years post diagnosis and I still get incredibly angry at times.

If I could cure my son, I would. To watch him struggle breaks my heart. Some days worse then others.

I have two little girls younger then Devin who is 4. The 22 month old is fine. The 2 week old we'll have to wait and see but I am watching closely as I watched her sister closely.

I wish you luck and patience.

Mrsbear said...

I don't think anyone could fault you for being angry. Watching your kid struggle does suck. Seeing your kid suffer is not something you get used to, it's always going to break your heart. Sort through your feelings at your own pace.

I'll be thinking of you, Patty.

Ginny Marie said...

There's so much wisdom in the comments above, I don't have much to add. From teaching kids with autism, I know that the smallest things for other kids can be a huge challenge for kids with autism. And while there may never be a cure, if research provides more understand of what is behind autism, perhaps we can help those with autism overcome it. Thinking of you...

beckmarsh said...

I say go ahead and embrace the anger. It's not fair! It sucks!
Having said that, I'm proud of you, Patty. You have yet to give up on helping Danny navigate life, friends, school, etc. You are a tremendous advocate for him and an educator for others. (Deep breath... here comes the cliche...) Let the anger propel you along as you fight for what Danny needs from "the system" and church and even peers.

p.s. I'm angry about the last year of my life and I find that slamming things around and listening to loud and obnoxious music helps. (I do this when the kids are in school, so it's not a true spontaneous expression of emotion, I guess).

Sarah said...

I wish I could say that your anger is going to dissipate, but its not. It will flow and ebb. The good news is that you will recognize when it is coming on and you will find your own way of coping with it. I find that when I am confronted with a healthy dose, I turn to running first then focus my energy on one thing that will make Emma and Jack happy---it can be as simple as giving them a bowl of ice cream :)

There is no right or wrong answer for how you feel---they are your feelings. Never apologize for them. For the time being, it is one day at a time and before you know it, you will be taking two days at a time---until one day you will realize that a week has passed and your routine is solid and your children are happy.

Kim said...

I saw that on facebook too and my first thought was "no way am i posting that". Because, like you, I would love to make life easier for my son. And if that means a "cure" for whatever is causing him to have difficulties with so many things, then heck ya, give him the cure.

I don't think it's changing who your child is, I think it is helping to reveal a bit more of who they are. Certain behaviors hold them back from being who they could be without them. If somethign comes along that can help them grow and overcome... Why should we feel bad about wanting that for our children?

I do want my child to be accepted for who he is, but that doesn't mean I don't want to help him in any way I can.

HarryJack's Mom said...

Everyone has said such beautiful things, and my heart hurts for the sad parts of the journey you are on while rejoicing for the gifts you will find along the way. We have a 'quirkier' son and I can totally hear my husband fearing the loss of 'him' as he's succombed to some peer pressures and gotten into the groove of school life a bit easier than I expected. GL - you seem to have the right attitude and a lot of supportive friends, so I'm sure your support of D will be a true gift for him. I will also be thinking of you all and wishing you the best.

Elizabeth Channel said...

I think the anger phase can be a long one, and while I don't have any real words of wisdom because my journey parallels yours, it does help to know that we both have friends traveling similar roads.

Alysia said...

I know you wrote this months ago, but I just found you today. It's as if I was reading my own words. I think you can have acceptance and anger - you know this is who your kid is, but you can still be angry about it and wish it would change.
I have known there was something different about my little guy since he was 4 months old. Would I change him? No. Would I change the daily struggles he has? If I could, in a heartbeat.
Thanks for your honesty and openness.