Recent conversation with friend:
Me: I’ve been really worried about Danny making friends.
Friend: I know what you mean. I worry about my kids and their friends, too.
Me: But here’s the thing: Danny doesn’t actually have any friends.
Friend: Sure he does! What about the kids at church?
Me: Uh, no, they’re not really his friends. He never talks about them and they aren’t especially nice to him. I worry that the kids are making fun of him. I heard one kid say…..
Friend: (interrupting) Yeah. All moms worry about that, right? I mean, just the other day, someone teased my daughter about a boy who likes her.
Me: Hmmmm… yeah, but that’s not really the same as being called a “retard” by classmates, is it?
Friend: Well, I know what you mean. No one likes to hear their kid being teased.
Me: (hitting head against wall) Yeah, well, I have to run. Thanks for talking (sarcastically).
All mothers worry about their children’s futures. We worry about drugs and school and bullying. We worry about their health and self-esteem, their future careers and romantic lives.
When you have a kid with autism or any other special need, however, the worrying takes on epic proportions, mostly because these fears are so much more likely to come true than with NT kids. I don’t care what a mom of neurotypical kids says; it is NOT the same thing.
My son has high functioning autism, and I worry about his future to the point of obsession.
Now, of course I worry about my younger daughter and son. I want them to be happy and successful adults, too, but with Danny, I’m really scared. Scared that he might turn to drugs to deal with his social struggles or in order to fit in. Scared he may someday battle depression because he is so different and -everything–everything!– seems to be a bigger struggle for him.
I’m terrified of the day when he realizes people look at him strangely. I worry he won’t be able to hold a job or have a romantic relationship (if he wants one). Hell, I’m scared he won’t ever have a truly good friend.
I worry that someday all his struggles with sensory stimuli, learning and just daily living will prove to be too much for him, that he’ll just want to give up on it all, because life is just so damn hard for him.
And I worry that someday my daughter will realize that her brother is different and she won’t want him around. That she’ll be embarrassed of him and his differences.
This worry I have for my son who has autism is fundamentally different than the worry I harbor for my younger kids. OF COURSE, I don’t want any of them to be bullied, but in Danny’s case, it’s much more likely to happen. In fact, I’ve already witnessed episodes. Kids are cruel. We all know that, and many kids are the victims of bullying and teasing. I know I was. But, the thing about kids (and really, many adults) is that they are uncomfortable with people who are different. Kids who are different are very likely to get made fun of; it’s the law of the playground.
I want my other kids to go to college and get jobs, and sure, I know they could end up on welfare as easily as the next kid. But Danny? Danny who struggles with processing directions, who gets stressed so easily, who offends people sometimes by his bluntness? Yeah, SO much more likely to have problems in the workforce or even in interviews. And he is such a homebody, it isn’t such a stretch to imagine him living in my basement, playing video games into his 40s.
As parents we will always worry about our kids, but to say that the “normal” worry is the same as this is so insulting. It’s like me telling a friend whose kid has some disease that we all worry about our kids’ health, it’s no big deal.
I know I have to get a grip on these worries, and mostly I have. I work really hard to get Danny the help he needs to learn social skills, to succeed in school, to manage his stress. And I try not to think about the future too much, because when I do, it all seems so incredibly overwhelming and scary.
And the last thing I need–any of us needs–is someone invalidating or minimizing those fears. Because as much as you try to gloss over them or make them seem less significant, they are still there. And they always will be.
Comments
Spectrummy Mummy
Great post, Patty! I wonder if that thing we (neurotypicals) find ourselves doing that we think is empathy is actually something very different.
We try to say to somebody that we share those feelings too, I understand what you are saying, but because our lack of experience we can’t always put ourselves in the other person’s place, and it does come off as dismissive.
I’m conscious that I’m prone to doing this myself, and in trying to offer support, I might make matters worse. It will certainly be something I think about as my daughter ages, and I have to demonstrate that I validate her feelings, rather than understand life through her eyes, when the truth is it will probably always be beyond the limits of my comprehension.
Patty
I agree, SM. Lately, I have been examining how I react to people when they are struggling. What I have noticed is that most often, I (and other people I know) try to talk the person out of her feelings. For example, I might say, “Everything is going to be okay, don’t worry” when a friend tells me some bad news. But, that’s not at all validating. Often, especially when dealing with my kids, I don’t give the person permission to feel whatever emotion it is. I just want the negative part to be done. But that is selfish; it’s not empathetic at all. I think the most selfless and empathetic thing a person can do in these situations is listen, withhold judgment and validate.
So, I agree that what we often think of as empathy isn’t really very validating. Who wants to hear, “Oh, yeah? I went through the same thing, let me tell you all about it.” No, we’d rather people listen and commiserate and sometimes admit that yes, it sucks (whatever it might be.)
Mama Pants
Oh mama(((hugs))). The worry can make us just insane, can’t it? This post spoke to me. Thank you for writing it. I feel like I could have written it myself.
Patty
Aw, thanks, Mama Pants!
Amanda
I can realte to this post so much, thank you for writing it. As heartbreaking as it is it’s reality.
My daughter has not been diagnosed yet but we have an appt schedule for mid June to get her evauated. I filled out the checklist for SPD to show up to the appt fully prepared and under the sensory seeker all applied to my daughter but 2.
After further research we are thinking our daughter may be just like your son and have high functioning autism as well.
I run an in home daycare and my sweet baby girl is judged by some of my daycare kids AND parents that don’t understand her and her behavior on a daily basis. Though it is heartbreaking for me to watch before my very eyes in our own home I am glad i’m able to stand by and stand up for her while she is so young (4 years old) so she can learn and use these tools as she gets older to stand up for herself and not allow rude cruel people to judge her.
Honest
Amanda
I’m new here and not sure how to edit the post I just submitted. my daughter hit send for me.
Anyways keep your head up Jenny and just know that what you are teaching your son now will stay with him as he gets older and with your support he will turn out to be just fine.
My husband has sensory processing disorder and as a child he was labeled the trouble maker and going into his teen years he was told he will never amount to anything and most likely end up in jail. He has more than proved all those people wrong!
He is an amazing husband and such a great father, he has worked so hard to get to where he is today with his career. In fact if he runs into someone from his past that use to say these hurtful things about him, they see what he has become and they hug him and tell them how proud they are of him.
Though there will always be worry, there is also lot’s of hope!
Patty
You’re right: there is also a lot of hope. For sure. We have had so many amazing breakthroughs with our son. I have confidence he will be okay. I just want people to understand that when I am worried about my son’s future, it isn’t the same thing as worrying about an NT kid’s future. To tell me that it’s the same thing is kind of insulting, ya know?
Amanda
I couldn’t agree more, it has got to be near the top of my list of one of the most blood boiling sitiations.
I honestly have a very hard time talking with people about my daughter when it comes to her issues because I feel they just don’t get it, they don’t understand.
Susan S.
Patty, so beautifully written, and spoken from the heart. These days, my worries have been about how to help my son make it through another day of school (well, when school was in session). And now that we’re in summer break, we’re dealing with another and new diagnosis of ADHD (and pervasive anxiety). Just trying to figure out how to help this child of mine make it through our public school system.
I hadn’t even gotten to when he gets out of school and has to make his way in the world.
I understand your worries. But it sound like you’re doing some great things to help Danny (social groups?). Hang in there.
Patty
Thanks, Susan. Yes, getting our kids through school is not an easy feat, unfortunately!
Jenny from the Block
Yes, sometimes that angers me, too. I have thought about it lately and I think that (most) people just do not know what to say and do not understand, but they feel they have to same something or or that downplaying is being positive, so they say things like that instead of just listening, being supportive. Feeling dismissed is the worst! And you are right, it is NOT the same thing as what a parent of a NT kid faces. I have a BFF who has no kids and could not possibly understand mine to the full extent, but thank God she has never acted that way…she just listens and offers support. We all need more people like that in our lives!
Patty
Jenny, that is so true. I know I have said things in the past that were dismissive and not at all validating. I’m glad I notice it more now so I can react better and listen more.
I’m glad you have a good friend who isn’t dismissive!