I consider myself unbelievably lucky in the friend department. I have close friends who live nearby – fellow moms that I talk to often (though not enough lately!) and I know they always have my back, a fact that has gotten me through some very difficult days. I have friends I cherish who live farther away and I keep in touch with via facebook, email, or the phone. And I have a wonderful group of online friends who have thoroughly enriched my life *waves at the Betties, Pen and Cherries, Wiffers, and Red (that’s you, Kim, in case you didn’t know ;))*.
Still, there was something missing for me in the support department because there are aspects of living with autism that my face-to-face friends can’t understand. I don’t mean that they are unwilling or too dim to understand; these are things that they simply cannot understand. And I’m really glad they can’t. But it made those aspects of my life feel pretty lonely. I can, and do, talk to Sparky about them, but we share the same kids, so we still don’t get validation other than, “Yep, he’s really doing that.”
Some of these things are in a grey area for me because both of my children are autistic. Take this morning for instance. It’s spring break for us, so I took the boys to a local cafe that has an indoor play area. BamBam did not do well. He kept running in and out of the play area, slamming the door, and being very possessive of toys he wasn’t even playing with, to a point that I knew would result in kicking had I not intervened. Kicking like that is how he got his nickname in the first place, though he’s keeping it because he also now loves to play the drums. Anyway, this is something that I would, and will, share with my close band of mothers.
I can already hear them saying, “Yeah, but isn’t that pretty normal behavior for a three year old?” to which I will respond with my usual, “How the hell would I know?” It’s certainly normal for my three year old, but is that because it’s three year old behavior or because he is autistic and overstimulated by the number of kids, the new setting, and maybe the noise from the espresso machine. He’s not yet verbal enough to tell me what’s going on. Then Zoo Keeper (formerly BeBop), as is his tendency lately, became very angry with me for intervening and saying no to BamBam. As he followed me out of the play area, he donned his standard angry stance-face combo and said to me, “I cannot believe the way you are acting.” Yeah, kid, I’m obviously the problem here.
Other things are a little less grey and I’m incredibly grateful when someone steps in to help me out in explaining them. At coffee with BC Maven and Marathon Girl last fall, I was lamenting the fact that Zoo Keeper still does not dress himself. Marathon Girl mentioned that her second son doesn’t dress himself either. But he’s three and Zoo Keeper is five, so I tried to explain it further. Zoo Keeper also still needs help getting in cars and stuff like that. Well, her kids still have trouble scrambling over the seats or getting in to the back of our vans/SUVs.
Don’t get me wrong here. I have no problem with her asking these questions. She’s trying to understand and help and I really appreciate it. At times, though, my brain shifts over into questioning myself mode, where I start to wonder if I’m making stuff up and there really isn’t a difference*. I had started into this mode on that day when BC Maven chimed in to say that she’s noticed the difference. She and I carpool because our older kids go to school together. “When I pick Zoo Keeper up to put him in the car, it feels different than when I pick up [my son]. It’s like Zoo Keeper doesn’t help you at all. Like he’s dead weight.” That’s because he’s low-tone, which I’ll talk about in a minute, but I didn’t realize there was a difference because BOTH of my boys are low-tone. It took someone who could compare them (I don’t have to lift her son into my car, so I have never picked him up) to explain what the difference was. And I could have kissed her for it.
Then there are the things I think of as the Izzard issues. Eddie Izzard is an incredibly talented British comedian and a transvestite. One of his comedy routines involves not joining the army and America’s Don’t Ask, Don’t Tell policy. He says, “If you’re a bloke wearing a lot of make-up, they don’t really need to ask.” Without giving it much conscious thought, I know the Izzard issues are things I won’t share with my friends. It’s not that I don’t trust my friends to see me through, they’ve more than proven that they’re not going anywhere, but I don’t want to have to explain that I’m not…making it up, for lack of a better phrase. These are things I know they can’t advise me on, they have no frame of reference, so I’d rather not burden them.
As I said, I get a lot of support from my friends, but this is something they can’t help with, so I realized I needed to find some other parents with autistic kids. I do have one local friend with an autistic son, but we almost never get our schedules to match up and, even when we do, we always have the kids with us. It’s hard to have a conversation with kids around anyway, but it’s especially hard when what you are talking about is them. I also have some online friends who have autistic kids, but I was looking for in-person support that could include more than a virtual hug if needed.
My therapist has actually told me several times about a friend of hers, a fellow therapist, who also has a free weekly meeting for parents of kids with autism. I don’t really like group meetings, so I had always taken the info and done nothing with it. A few weeks ago, I had occasion to contact the friend/therapist about something else and, while on the phone, she invited me to the group. I decided it was time for me to check it out. And to make Sparky go with me.
So I got a sitter and we went to our first meeting two weeks ago. Sparky doesn’t like group meetings any more than I do and felt that the group part of our weight loss program was the least helpful portion, so he went to support me without believing he would get much of anything out of the experience himself. He left the meeting kind of excited about attending more in the future. We decided I would attend every week and Sparky will come with me whenever we can swing a sitter.
The first meeting was composed of the therapist, one regular, one new person, and us. There was a healing quality to talking about the issues you deal with and having the other people in the group validate you. Yes, we’ve been there, too. And it was even better to be able to offer something back. One of the mothers was having an issue with her son eating constantly, even when she knew he couldn’t possibly be hungry, but he’d tell her he was. She was limiting him to carrots and other veggies to try and keep him healthy on his binges. I was able, due to a recent conversation with Zoo Keeper’s occupational therapist, to suggest she try giving him something really spicy or sweet because it may be that he needs the sensory input of a strong flavor. Then we all started talking about textures – if he is partial to chewy things, maybe the crunchiness of the carrots just wasn’t meeting the sensory need he was trying to fill.
I went back last week for the second time and got even more out of it than I did the first meeting. The new lady from the previous week was not there, but most of the regulars were. I should have felt awkward, but I didn’t. I can’t explain why, but I felt like I was hanging out with a group of old friends. About half-way through the meeting, someone asked about our road to diagnosis. In telling them about it, I demonstrated the face and hand movement Zoo Keeper does when he grabs something. They laughed. The great thing was, they weren’t laughing at me or Zoo Keeper; they were laughing with us. Because they totally got it. Then they went around the room demonstrating the motions or rituals that their kids must do before they sit in a chair or put on their shoes. And I mentioned the little wave dance BamBam does when he gets really excited. I’m so torn about it. It is one of the cutest things I’ve ever seen and it demonstrates the essence of who he is, but it’s going to cause him some serious issues if he still does it in public by the time he’s in fourth grade. There was a lot of head nodding.
We also talked about our boys being low-tone. It means their muscles are floppier, but it’s more about coordination than strength. They’re really strong, especially BamBam, but neither of them has ever held on to me when I carry them. I would see other kids, arms and legs wrapped around mom, holding on for dear life and wish my kids would share the weight with me like that. My kids just hang there and let me do all the work. I never realized that was due to low tone until the group meeting when others said they had the same experience. With older, much heavier kids. Yikes, not looking forward to that.
So, with all the validation floating around the room, I pulled out one of my Izzard issues. “Zoo Keeper has been putting everything in his mouth lately. More than even usual for him. I think he’s having anxiety because there’s been a lot of change lately with therapists and his brother starting school and stuff like that. But I’ve recently realized he’s been, uhm…” I looked down at my fingernails, “eating the coffee table.”
I looked up to nodding heads again. “It’s been going on a while and at first I thought it was just from rough play with matchbox cars or something, but then I caught him with wood in his mouth.” More nodding and some acknowledgement that their kids did similar things.
I must have looked pretty surprised because one of the regulars said, “It’s hard to tell people, right? Because you think they won’t believe you. Or they’ll think you’re making it up.”
“Yeah. Even here I was picturing myself having to explain that, no, that’s not a metaphor for anything, he’s really eating the table. I’ve pulled actual wood out of his mouth that he’d been chewing on. Worse, I know the first time I caught him was hardly the first time he did it and I’ve never found any chewed up pieces of wood around, so he must be swallowing it. On purpose.” We went on to talk about ways to deal with it, stuff to try, and more that others needed to vent about. But the thing that really helped me was the validation. The knowledge that there are others out there like my kids and other mothers dealing with, or on the other side of, the same stuff I’m dealing with. Not that I really thought I was alone in that, but to meet the people face-to-face and talk about it, and have them totally understand as a shared experience, is a beautiful thing.
We had a family dinner last weekend with BC Maven’s and Marathon Girl’s families. The adults spent the time catching up and talking about personal stuff. It was a great evening. As we were cleaning up dishes, I decided to tell them about the coffee table. They seemed to take it in stride until I got to the part about Zoo Keeper chewing on the strands of wood, at which point BC Maven turned from the sink to look at me and said, “Wait, you caught him with WOOD in his mouth?” Yes, yes I did. Three times so far, in fact. But her response cracked me up, probably because I had already been validated by the group. Which means that the group may actually help me be more open with my friends. And that, too, is a beautiful thing.
*I recently attended a talk for the Special Needs Group of our PTSA where I heard autism referred to as an invisible disorder for the first time. It’s called that, as is ADHD and a few others, because you have to spend some time with someone with high-functioning autism before you can see that something is off. That’s helped me to stop questioning myself so much.