it’s hard to make new autism mom friends

I watched the mom and her son enter the waiting room. He was clutching the same big, round, brightly-colored plush animal that he’d brought with him the week before. She walked to sit in a chair along the wall across the room from me where she’d sat last week, and he started spinning and vocalizing happily near me and my girls, who were climbing on the chairs and rolling on the floor. The boy’s mother occasionally looked up from clipping the coupons she’d brought to check in on him. Her eyes flicked over to me once or twice, and I wondered if she was gauging my reaction to his atypical behavior. I smiled at her, trying to convey some sort of recognition, and wondered if she noticed Ham making some of the same kinds of happy noises from her spot on the floor, halfway under the row of blue plastic chairs.

I never really know how to start small talk with another person, but I’d missed my chance last week when I first “met” them and I knew that the following week would be our last before preschool, so I took aim and fired: “Coupons– smart! I usually just sit here playing around on my phone.”

Success– she smiled and we launched into some brief small talk. Beneath the surface I detected the delicate dance in which we both knew, but had to pretend we didn’t, that the other’s child was autistic. I don’t think of “autistic” as an insult, and yet, I know better than to be presumptuous and risk offending. We peppered our conversation with clues– I allowed the acronym “ABA” to slide in without providing context, indicating that I knew she knew what that was– until we hit a point where, I think, we knew we’d both said it in so many words.

As an aside, I wish we could just skip all of that and go straight to the part where we just say it already, but it seems like most other parents aren’t quite ready for that and I’m trying to make friends here.

We talked about preschool. I moved across the room to talk to her. She said her son wasn’t in a sub-separate classroom like mine are about to be because she wants him to be around “normal” kids. Not even an integrated class– she skirted the public school system, which likely would have offered some services to her son, and sent him to a private preschool with an ABA aide. Only “normal” kids.

“He imitates their behavior,” she said, “so of course, we want him imitating normal behavior.”

Ah. There it is.

It’s hard to make autism mom friends.

I don’t expect everyone to do things exactly the way I’d do them. Quite the opposite, really– I need my friends to help me navigate, not just tell me I’m holding the map correctly as we head for an iceberg. I don’t want yes-men, I want other ideas. Other possibilities. Gentle prodding, telling me to consider another angle sometimes. This is all uncomfortable but good.


There’s a foundation to be laid, and everything surrounding autism is rife with controversy. Some things I can’t abide, and seemingly minor parenting decisions all point back to methodologies and philosophies of raising autistic kids that turn really quickly into friendship barriers.

I’m okay with a friend feeding her kid M&Ms for dinner on Thursday because the kid has been screaming all day and her spouse has been on a business trip and she’s just exhausted. I’m okay with it because I’ve been there. The hypothetical friend and I share the philosophy that sometimes you just gotta lean in and roll with it because toddlers are terrifying and mighty creatures, and as long as your life consists of a baseline of 95% good choices and 5% survival choices, you’re probably doing okay. But I would not be able to maintain a friendship long-term with someone who fed their kids M&Ms for dinner every night for weeks on end, with no concern for nutrition. There is a fundamental difference.

I can’t sustain a long-term “we understand each other, and being friends with you fills the hole that my non-autism-parent friends just can’t” relationship with someone whose primary concern for her child is that he learn to adapt and imitate “normal” kids (normal really is one of my least favorite words), or someone who doesn’t consider how it might feel to deprive her child of the chance to have an autistic friend who “gets” him. It makes me wonder if she sees him spinning and vocalizing with joy in the waiting room– bothering absolutely no one– and processes the event through the filter of how she thinks other people are seeing him. He’s a sweet little boy! I love the happy sounds he makes. I love the happy sounds my girls make, too– even the impish little noises that tell me specifically in what way Chicken is misbehaving (she actually has different happy noises for bothering the dog, taking the roll of contact paper out of the art cabinet she’s not meant to be in, and climbing on the table). It’s part of who my girls are.

I won’t fault a parent for having a hard time with autism itself, and I know it’s controversial to even suggest separating out autism from the autistic person, but listen– at the very least, the happy parts of autism are part of your child. Maybe the hard parts with seizures and sensory overload and screaming and anxiety, those you are allowed to separate out and get angry at. But damn, enjoy the happy noises, even if they happen in an otherwise quiet waiting room. It’s cute as hell and it’s communication. Normal is stupid and boring.

There are other reasons to be wary of potential autism mom friends. I run waaaay the hell in the other direction when vaccines get introduced into the conversation. No one ever brings that up at all unless it’s to question if they played a role. I won’t even entertain that one anymore. That’s red flag #1. Other little things, I can handle. I do ABA, you do FloorTime or SonRise? That’s okay! We don’t have to live out our days in identical fashion to relate to one another. But the premise has to match, and in the volatile autism world, it’s hard to line that piece up with someone else and get a match.

I do have a few autism mom friends, and luckily, some are even local. At the very least, finding your tribe is a bit easier when the internet lets you cast a wide net. But man… those incidental moments when a potential friend seems to serendipitously appear before you? I wish more of those could work out. It means so much to be able to lock eyes across the waiting room and tell someone without words that you understand.


comings and goings


by the beach, summer 2012

I get the urge for going
When the meadow grass is turning brown
Summertime is falling down and winter is closing in

— Joni Mitchell

(I needed this photo today. It’s freezing outside. Summer will be back some day, right?)

I found out via Facebook last night that Pete Seeger passed away. Historically, I’ve never been a huge fan of folk music– it’s one of the few genres that have felt a bit inaccessible to me. I recognize the irony in that, since folk music belongs to The People, the common human experience. It never felt terribly relevant to me as a teen and young college student because anything timeless went straight over my head and was ignored in favor of the preferred screeching vocals and whirring guitars of Kids Today. Honestly, the first time I heard “Pete Seeger” I wondered if he was related to Bob Seger, in whom I also had limited interest.

My next encounter with Pete Seeger was in 2009, while sifting through my recently– and suddenly– deceased father-in-law’s wordily possessions, of which there were many. His CD collection was astounding in size and scope, and featured more folk music than I’d ever heard of. The name Seeger appeared on a number of the discs, usually preceded by Pete but occasionally Mike or Peggy or another of the many musicians in the Seeger family appeared as well. I listened to some of it to ease my sadness a bit but still, it didn’t really speak to me (although I did like a folk covers album he had by Bruce Springsteen that featured a Pete Seeger song).

When my girls were born in 2011, I thought about my father-in-law often and decided to take a real stab at this folk music thing, out of a desire to connect with the part of M’s family that was now gone and to try to fill in some of what was missing in the girls’ lives. I found that while there was a lot of folk and Americana out there that, in its original form, felt a bit too antique for my taste, it translated excellently into reinvented children’s music a la Elizabeth Mitchell, Dan Zanes and other folksy/kindie* offerings.

One of the songs I found through Elizabeth Mitchell (oh, how I love her) is called Freight Train. It falls into a class of children’s songs that I love– “songs that are sweet and appropriate for children but have a depth to them and don’t sound like children’s music.” I looked the song up and found out some interesting things. You can read the full Wikipedia article yourself if you feel so inclined, but suffice it to say that a young Black girl in her early teens wrote the song and then years later, through a strange coincidence of fate, connects with the Seeger family and her talents are discovered by one of the most prolific folk families of connected musicians in the US and she starts recording her music.

In another interesting twist, I found out soon after discovering the CDs that Mike Seeger taught my father-in-law’s girlfriend– herself a folk singer, in her seventies– how to play guitar.

An hour after the girls’ ABA session this afternoon, I got a phone call from a familiar-looking but unknown number. It was the supervisor for their ABA program asking if I “had a few minutes.” She broke the news to me that one of Chicken’s ABA therapists, “K”, is leaving shortly after her wedding at the end of the month. I knew about the wedding because she’s mentioned it off and on and I’ve asked about her plans, and I knew she was moving to a new apartment because she had to take a quick phone call about it a few weeks ago, but I didn’t realize she was moving far enough away to be transferring outside our catchment area.

All of our therapists are dedicated and hardworking professionals– really. I expected to have one or two who I was less thrilled with than the others because in total we see seven different people from that agency, but they’re all great– different from one another, but great. I dont mean to make any comparisons but I have to say that K is really, really special. She’s a friendly dark-haired four-foot-ten bundle of energy who looks young but is professional, organized, creative, quick-thinking, smart, and always seems to get a lot out of Chicken even on tough days (like this morning). She was born for this job and has exactly the right set of skills for it, which honestly has always made me a bit nervous thinking she was about to get promoted or trade up to another agency using her expertise as a well-earned bargaining chip.

She’s not leaving the job, just the location. And us.

After I hung up the phone, I had a surprising reaction– I burst into tears.

It would be silly to say that these therapists are like family. Often people say things like that but don’t really mean it, not literally. I wouldn’t ever call them up just to chat, or hang out with them outside the scope of their jobs, or offer to drive them to the airport. It’s not for lack of enjoying their company but because there are professional lines that shouldn’t be crossed and because, while they might be very central to my life, me and my kids are much more of a footnote in theirs. You can love your job and the children and families that you work with, but at the end of the day you go home to your significant other and eat dinner and watch The Voice and text your friend. That is their life, even if what they do is pretty much my life at the moment. It’s a perspective I didn’t have when I was a childcare teacher but which I  very much appreciate now. So while they may not be “family” in a  strict sense, they are very important to me and are intrinsically tied in with our family’s life and with my vision of my children’s well-being.

I wonder who K’s replacement will be. It’ll be a new hire, which I admit to being a touch anxious about because I really hate to see an experienced, capable and very organized person replaced by someone who’s still learning the ropes and relying heavily on coworker support. K has two sessions a week that partially overlap with a BCBA (supervising ABA professional), but one alone, so I hope the new therapist will have enough support to get through the solo time. I’m also apprehensive about toppling the balance– like I said, against all odds, we really love all of the therapists right now; I don’t want to push our luck by bringing a new person on-board. I feel like this will all put us at a deficit for a little while. On top of all of that, I’m really going to miss K– and despite her reduced social interaction skills, I think Chicken will too, in her own way. K has been fantastic. And since she’s about to effectively reset her entire caseload and start over, and whole new crop of families are about to enjoy the genuine benefit of having her as a “part of their family,” too. I can’t begrudge them that blessing.

(In perfect alignment with the structure of this post, K is herself a folk/pop singer-songwriter who I’d totally link you to via her YouTube channel if I wasn’t just slightly more interested in her privacy than I am in wanting to show off her skills. I really, really wish I could link you to her. She’s very talented.)

I’m trying hard to remain open-minded and open-hearted on this one. I’m sure we’ll grow to love the new hire, and it will be my job to help guide her. I will introduce her and Chicken to each other. I will help the new therapist learn about Chicken’s quirks, challenges, and preferences, and will probably give her a lot of snacks to use as friendship-building tools (toddlers can be simple creatures, after all). I will give her the cliff’s notes version of Chicken’s history and current set of “things to watch for.” I will be patient and remain confident of her abilities and potential, within reason, while she figures it out. I’ve been the new kid before, too.

It’s hard to process some of these transitions in the deep dark heart of winter, where there’s a grey layer hanging over everything like a physical fog on top of the pre-existing mental fog of feeling about 80% overwhelmed 90% of the time. It’s not easy to manage even small changes in the tenuous balance of my kids’ different therapies. It feels so vulnerable to have to welcome in a new person and let go of someone with whom we’re comfortable and who’s been a good fit. But this is just tough because it’s the first time we’ve had to do this. My girls are pretty young still, after all, and we’ve only been doing ABA for a few months. I want to set us into a holding pattern so we can just power on through until preschool, but that’s not how it works. I hear little comments here and there from the other therapists about degrees they’re currently working towards or “last summer when I worked at ____” that remind me that this is a high turnover profession, and I’m sure they won’t all still be with us to see the girls turn three. It’s a normal part of the process, and one we’ll get adjusted to with time.

Until then, I need to come up with a good parting/wedding gift for K.

* Kindie! It’s the clever name given to indie music for kids. Here’s a neat article from 2006 I found on it. If you’re interested in this kind of music, I’d recommend just browsing around and writing down some of the artist names that pop up, but definitely the ones I mentioned above plus a few others: Elizabeth Mitchell, Dan Zanes, Charlie Hope, and Caspar Babypants (formerly of Presidents of the United States of America) are my top favorites. Barenaked Ladies have at least one kids’ album I know of, too.