untitled 

Parenting can be hard. 
.

Every kind of parenting. 

The enormity of the responsibility can be downright terrifying at times and both the physical and emotional demands of the day-to-day can be completely overwhelming. I like to joke that it’s like the Peace Corps – the toughest job you’ll ever love. 

Parents bitch about parenting. To spouses, to friends, to other parents. Because … see above. It’s big, hard, messy, scary stuff. 

I had a friend who once wrote on her Facebook page, “My kingdom to be single with no responsibilities again. Someone book me a ticket to Fiji, STAT.”

Her son was only ten at the time that she wrote it. Two years later, the post popped up in her Time Hop. Her son, who now had his own Facebook account, came to her in tears. “Mom,” he said, “do you wish you didn’t have us?”

To be clear, this was a neurotypical child. 

Social media lulls us into thinking that we’re talking only to a likeminded hive of friends, that they get our humor, that they understand our frustrations, that it’s a great place to vent because lo and behold, when we do, we find a chorus of amens. 

It’s not. 

Along with its tremendous joys, parenting autistic children presents unique challenges. While if you’ve been here for more than a minute and a half you know that I would argue that there’s no one better to help us mitigate those challenges than autistic adults, I do think, without a doubt, that connecting with other parents walking the same path can also be a powerful way to strengthen ourselves so that we can best support our kids. Through the sharing of resources and ideas to the simple recognition that we are not in this alone, we can become better parents.  

A number of my fellow moms of autistic children have expressed concerns on Diary recently about my call for respect in public discourse. 

A very (very) short and extremely (extremely!) crude summary of some of the comments might be:

If we can’t vent or share the hard stuff on line, then we lose the ability to connect with each other. 

Another might be:

Some of us feel censored when you tell us that we can’t say that we hate our kid’s autism without someone acting like we just said we don’t love our kids. It’s isolating and dishonest when we can’t speak our truth about this life.

I think it’s important to respond to these comments – not just because I get enough of them to warrant it, but because I get it. And because it took me a long time to get it. So I’d like to explain. 

In response to one comment in the vein of those above, my friend, Cara, an autistic activist, wrote:

Parents (and indeed, anyone) have the right to feel any way they choose. But they do not have the right to an echo chamber. If a parent needs to vent without judgment or comment, the Internet isn’t the place. A therapist’s office is. Or the pages of a journal. Because we as autistic people deserve the right not to hear that we make our loved ones’ lives harder, or that the ones we love want to change something so badly that is an intrinsic part of who we are.

For emphasis:

Parents (and indeed, anyone) have the right to feel any way they choose.

We are all entitled to feel anything we feel. I always tell my kids that feelings can never be wrong. (Though the information that forms the basis of those feelings might be wildly inaccurate and is worthy of analysis.) But either way, it’s how we choose to act upon our feelings that matters. 

Feeling frustrated, upset, angry, wanting to throw something at a wall and ask God why your kid is hurting … I get it. Viscerally, I GET it. But how and where we choose to express those feelings matters. A lot. 

For the record, that reader’s response to Cara was beautiful and gracious and looked like this:

Thank you, Cara. I didn’t mean to discount anyone’s feelings with my comment. I appreciate your sharing your perspective, and you’re right.

Cara responded:

No offense taken, […], more like a reminder. So many parents seem to jump to the conclusion that autistic adults are telling them “you can’t ever be sad or have a hard day” and that’s just not the case. What we ARE telling them is that they have to be careful where and how those feelings are expressed, and that they don’t get to just vomit them out on the internet – especially not in a place where autistic adults do post and are frequent, and doubly especially not in a place where their kids might see it one day.

I basically just sat back and cried as I watched that interaction unfold, because, well, that. 

In response to a comment along the lines of the first one to which I referred, another autistic advocate, Chavisory, wrote:

Parents still can find support and fellowship over social media without making public the most highly personal information about their kids. Maybe there are things that stay only in private or closed forums, even as there are things that maybe shouldn’t go online at all.

Also, you can ask people who are willing and consenting to give you the information you seek: autistic adults. 

You can have all the best of all worlds – community with other parents, the information you need…without violating your children’s rights to privacy.

Really great forums that have tons of both parents and autistic adults where you can have questions posted anonymously include the Autism Women’s Network, Parenting Autistic Children with Love and Acceptance (PACLA), and We Are Like Your Child.

I had written something very similar in response to the same comment: 

(Apologies for the caps, they denote only emphasis, not anger / snark or anything else, I promise.)

i hear you.

but (and this is a big BUT), compromising our kids’ privacy and dignity need not be mutually exclusive from getting the help we need from others to navigate this journey.

not sharing publicly doesn’t mean not reaching out privately. not shaming our kids by telling ANYONE with an internet connection [every intimate detail of their lives] does not mean not connecting with others in a million, zillion private ways to brainstorm, ask for help, share experiences, find play dates (virtual or otherwise) etc, etc, etc. 

send a private message, create a CLOSED facebook group, start an email list with parents of autistic people or autistic adults in the area (or not in the area, who cares?), read autistic blogs and ask questions, ask the mom you see every week in the waiting room at speech therapy for her phone number.

i talk with friends PRIVATELY about these things all the time. we vent, we cry, we figure things out and we support each other. OUT OF THE PUBLIC EYE.

we can find people all over the place. depending on where you live, it may be at local meet ups, at advocacy / activist gatherings, at school, or, if you’re in an area where you just don’t have those things, in discussion groups, online forums, hell, even in the comments on diary. i see people do it all the time … “hey, can I DM you a question?”

there are myriad settings in which we can find one another and THEN we can set about saying, “there are some things i’d love to pick your brain on .. may we take this off line?”

i am not EVER suggesting that we shut down conversation, but i am begging to take it out of the permanent spotlight.

I want to say this part again:

i talk with friends PRIVATELY about these things all the time. we vent, we cry, we figure things out and we support each other. OUT OF THE PUBLIC EYE.

My friend Alysia and I are basically connected via text or Internet 23 hours a day. 

I belong to an invitation-only email list in my town. The only requirement for an invite? Having an autistic student in our district. 

I am in direct message conversations with autistic friends on Facebook all day every day. 

And I have a private group of four friends – all moms – where I can start a post with the word “VAULT” and say what I need to say, knowing that whatever it is, it’s safe with them, that they will respond with love, and that they will guide me with respect for both me AND my daughters. 

Every one of those people, from the autistic adults to the moms, I met online. I met them through conversations on blogs and comment threads on Facebook. I now count them among my closest friends. 

Luau was home with the girls for thirteen years. He was the one who sat in anterooms full of outdated magazines for hours on end while Brooke was in speech therapy or at the social groups in which she met and hung out with autistic friends (because let’s not forget that she needs her safe spaces too!) That’s where his connections were made. By forging plans for play dates or just talking session after session. The waiting room denizens were the ones to whom he would turn with questions, concerns, and occasional tears.

So please don’t think that I’m telling you what to think or how to feel. I may suggest a reframe here and there, or ask you to examine the veracity of the information on which the feelings are based, but feelings themselves are what they are. Just ask Alysia, who knows every one of mine.* What I am telling you is that where and how we choose to express those feelings is everything. 

*Don’t actually ask her because she won’t tell you. Which is why I know that I can talk to her. See: vault. 

Once again, Cara said it best. 

“If a parent needs to vent without judgment or comment, the Internet isn’t the place. […] Because we as autistic people deserve the right not to hear that we make our loved ones’ lives harder, or that the ones we love want to change something so badly that is an intrinsic part of who we are.”

That doesn’t mean there aren’t plenty of places to talk. We might just have to do a little bit of work to find them. 

* Huge thanks to all who participated in these conversations, so respectfully and gently guiding one another (and all of us following along) to a higher plane of understanding. And, once again, always, still, to Cara and Chavisory and all of the autistic people who enrich this space every time they share their perspective, often at a high personal cost, THANK YOU. 

21 thoughts on “untitled 

  1. As always, I am so grateful for your prose. I always read your posts but only when I have time to reflect, for deep thoughts usually follow. Thank you. I love it when people make me think. Now, how to help get others to think isn’t next thought!

  2. This is a great post. I have seen a few of my posts from the past and I cringe…but, I know better and do better now. I have found a few people with whom I can have private chats, too. It helps to have a safe zone where we can vent and get advice, without making it public to the world.

  3. I LOVE this!
    It’s really hard to find those people that might understand sometimes. I know that when I first got a diagnosis, it was over whelming. (It’s only been almost 2 yrs) I posted it online and a woman that was the girls out leader to my now 15 yr old niece/daughter, (have custody of her) sent me a private message that her son has high functioning autism. I don’t think she realizes it, but she helped me to get through the shock. In 3 weeks we had a diagnosis and I never put the information together to even consider autism at the time. It all makes sense now.
    I know she is here if I need advice or just someone to talk to. Even though we aren’t really close, knowing that we both struggle sometimes with our boys bring us together online. I made a post on Facebook that I couldn’t sleep for a week worrying about my baby starting Kindergarten. She replied that she understood and hers was starting middle school this yr.
    I guess, my point was that finding that person to talk to that understands makes all the difference and not much should be shared on Facebook. I also use cafemom and they have an awesome autism support group on there. I don’t like any of the other groups. And there are a couple autism moms that will share their perspective sometimes. I wish I knew more autism adults.

  4. This is wonderful. Do parents need a community where we can be understood and express our feelings and needs? I cannot say this enough – It. Is.Necessary. But, we must do so with the resppect of our children in mind as well.

    Again, so so so good. Thank you.

  5. I think this post was very good and you made some very good points. I also think you are a good writer and make good points very often, which is why I read and follow your blog on facebook.
    However, I think some of your last posts have been in direct response to the people who commented on the controversial blog post you recently put up. I was not sure I wanted to address this, but it has really been bothering me. The problem I am having is I personally feel like you set your readers up to fail. As I said earlier I think you are a good writer, and you have a lot of knowledge you can share and are obviously influential to the community and your readers. That is why it bothers me that you would put something up that was so obviously likely to cause some discourse and then just take your leave, only to return when the damage had been done.
    You may have started this blog as a place to express yourself, but it has morphed into a blog with a readers who follow your blog, your page, and in turn you. A following means that you are leading. In this instance the readers are following your blog and you are leading the discussions.
    I think with your role of influence as discussion leader it was really not the right thing to do to just leave. It might be the right post and the right thing to say, but post when you do have time to moderate or you can turn off comments and put a disclaimer ” this is me, this is where I am, this is what I feel like saying and go feel what you want” and move on.
    I have always just read your blog and never commented, but that night I felt compelled to. It appeared to me that anyone who disagreed with the majority or was in a different place with their journey/feelings were being bullied. ( I am not even discussing the person who was banned, I only saw a bit of that inappropriate mess and I don’t count that as real discussion). I attempted to help explain the negative words of a commenter who appeared to me, to be not using the “best words” to describe feelings she was having, but they were genuine feelings. I would have tried to help anyone in that situation, because to me it appeared the person was being hurt and bullied for being vulnerable. However, I have no leverage in the community of readers, I am not a person they feel they know or would feel safe with, so even though I was initially trying to bridge a gap to take down the discourse it fell flat. I am sure though that, because of your established relationship with the readers and your level of knowledge and terms, you could have used words to help the readers better understand each other and saved a lot of hurt feelings in the process. In my few what ended up happening is that some of the people who may need the most teaching and the most support left feeling alienated and rejected. By choosing to put something up that could very obviously illicit intense emotions and then bowing out, I just thought it was not the right choice.
    I decided to comment here rather than the facebook page, because I was not interested in reintroducing controversy or stirring the pot, but I just felt that I needed to say something. Again, I follow you for a reason and my comments aren’t meant to take away from all the good you do, or the positive you inspire in people. I

    • I hear you, Robin. I fear this will sound defensive, but given that you are coming here to tell me why I made a poor choice, I’d like to explain why I disagree, or at least why it’s a choice I’d make again.

      I’m one person trying to lead a conversation among nearly 250,000. Often that feels like fighting a forest fire with a garden house. Sometimes I simply can’t do it and give my family what they need and deserve simultaneously. In those situations, my family will always win.

      To wait until I had the capacity to manage the fallout, as it were (as a working mom trying to manage our own fires at home) would have meant letting the AS post stand unanswered and I couldn’t do that. Rightly or wrongly, I felt far too strongly about it and the message that it sent to autistic individuals to remain silent, even for a day, a week, or however long it might have taken to have the time and wherewithal to appropriately moderate the comments.

      This is my blog. It’s a place where I share my feelings on various topics and often advocate for the Autistic Community. While I’m thrilled to have the community that’s popped up around it – and from which I learn tremendously – I won’t ever leave my autistic friends and family to twist in the wind because there’s a possibility that allistic folks will get upset or not be able to handle the consequences of their own comments without me there to babysit, translate, moderate, or whatever else might be expected of me.

      So while I wish I could have done what I usually do and I was and remain horrified by what transpired in my absence, those that I chose to prioritize – my immediate family and my autistic family, will always take precedence.

      Thank you for your generous words regarding my writing and what I do and for participating in the conversation.

      • Why don’t you get some trusted friends to help you out with moderation duties? FB makes it easy to add moderators to a page, and I’m sure you have plenty of volunteers to choose from.

  6. I wasn’t sure where else to say this where you would see it so I figured I would post here! Hope both girls have a good day at school! And if you ever have any questions about Katie’s high school, I went there and graduated this year, so I can answer any and all 🙂

  7. Jess, this is an example of what was said to me by my son, who is not on the spectrum, although at one point we thought he might be. Which brought me to your blog. He’s 11. We were joking around that when he was in my tummy he was Rachel, until we learned he was a boy. He asked how, I began that I had a test and one of things they could tell me was the sex. (I had a CVS).. OMG he asked me what I was going to do if the test didn’t check out. I had no idea he could jump to that conclusion.. which makes me happy that I had not posted anything about being anxious as I was about the test (older mom here). So I understand the need to not blast it out.. even though it might be very cathartic for those dealing with some of these tough times, it’s not in the best interest of any child to have this all documented. Closed groups, venting areas are needed but need to be secure.

  8. Pingback: Respect and privacy | lovenlearning

  9. I am writing a piece about resolutions for the autism community for 2016 and linked to this blog as an example of my suggested resolution #2, resolving to treat each other with respect when disagreeing. I know you are super busy, but I was wondering whether I could get your input on the piece before I try to publish it. Thanks so much for considering my request and for all you do for our community!!!!

    • hi, sophy .. thanks for the link. it’s a tough thing, especially given the stakes of some of the debates. while mutual respect is a wonderful goal and is tremendously important, it can so often be a false premise – ie parent or so-called advocacy organization does something horribly dehumanizing to autistic people and then autistic activists are chided for not being “respectful” of those people when standing up for their own and their community’s dignity and most basic civil rights. so i’d caution that it’s far more nuanced than it sometimes appears.

      • Thanks for your input. I’d like to respond and, if you’re interested, send you a draft of what I’ve written. But I need to do it offline (and definitely not on Facebook) because the piece and my thoughts are not ready for primetime or public consumption yet because they’re not fully formed. Also, one of the autistic writers I sent it to made a private comment that confirms my inclination to keep the discussion offline right now. I’m assuming you can access my email address here. If not, let me know. If it takes a while to respond, please understand that my guy needs extra attention during vacation. (Right now, he wants his turkey burger and he wants it now! and off I go) Thanks for your thoughts, as always!

      • I totally understand. Unfortunately, I can’t do email. If there’s anything further we can do here though, feel free 🙂

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