Camaraderie

It’s hard to be a special-needs mom in a typical mom world, it just is. When other moms in my neighborhood get together with their children, the mood is jovial, the cares are few. The kids fly off together exploring rooms, toys, finding things to entertain, their imaginations keyed up like violins. The moms gather in the kitchen like moths to light to swap stories, the minutiae of their days. The conversation is spirited and topical and tinged with neighborhood gossip… did you hear so-and-so did this? no! really?

It is more than that they all seem to speak the same language — which they do, of course. It’s that they do so without straining to hear whether one of their children has figured out how to unlock the screen door and is now running up the sidewalk about to dart into the path of a speeding car…

(It does not matter that I’ve already flitted back and forth “Just to check!” at least 15 times to confirm my worst nightmare only to find him still sitting there with a spray of playing cards around him. I’m certain the next time he will escape.)

No one else has to keep an eye on their still not potty-trained child because he’s making some suspicious sounds across the room.

As a consequence, I never fully participate in these play dates — nor do I enjoy them very much — even as I crave them. I am certain that my cheeks blaze with the embarrassment of being THAT mother, the overprotective one, the one who thinks everything is of possible peril to her children.

We are fortunate to live in a neighborhood rich with community. Neighbors know and look out for each other — we are so fortunate. There is an active and caring mom’s group, one that provided home-cooked meals to my family for three months after the boys were born. Most everyone knows that my boys are on the autism spectrum. A very few know what that actually means.

This summer has been punctuated by invites to join the neighborhood in pool outings and afternoon play dates and because of our incredibly packed schedule, we have missed most of it. I say that I’m too tired to go and that the boys are exhausted at the end of their long days, but what I’m really feeling is a certain weariness of spirit, the separateness of being the special-needs mom, the isolating feeling that keeps me from the easy banter at the kitchen table. There is this heaviness weighing me down.

Like now, here with these lovely women who just want to be my friends, who try to include us at every turn, who have never once been unkind to my children. How do I shake this weight? The camaraderie of shared experience, that’s what I crave and what brings me here again and again — more often to read these days, but increasingly to share. To share and shed some of this fatigue, my spirit fatigue.

And yet here? Now? Watch my spirit visibly lift with the dazzling smile that John flashes me right before rushing into my arms. I feel lighter just listening to him ask for a dvd in his tiny voice: “Yummy, Yummy, Wiggles?” My heart fills and spills over just listening to Sam read about weather and cyclones.

My boys are both my weight and my light, forever linked, teetering for balance. And I think, There it is! The shared experience.

Without a doubt, though, my spirit could use some serious personal attention, some me time, if you will. My blog friends, do you know what I mean?

13 Comments

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  • I do know what you mean. I get some from both sides because I have a couple of (sorta) typical kids and an autistic one. At playdates when Jack is around, there is definitely a sense of different. Even if it almost entirely comes from my head. I’m always watching him, wondering if I should help him play or let him be. It’s hard.

    It sounds like John and Sam are doing amazing things. Good for them!

  • Ugh! yes. I’m feeling pretty guilty about this, myself. We are included on the e-mail list for a local play group — the kids all went to Sami’s pre-school and will go again next year. I don’t go because 1) we’re busy and 2) It should be about Sami but it would be all about Oliver. It is a constant tug-of-war in my head. …

  • Secondo’s diagnosis put me on what feels like a completely separate path from other parents, my friends, who are also nothing but nice to us but as you said, don’t quite know what being on the spectrum means.

    I’m glad you’re in sharing mode! Though reading the blogs of others has been invaluable, there’s definitely something in sharing that lifts some of the weight for me.

  • Oh my lord, do I ever hear you! I will say that for us, it’s gotten easier over time. But one of the hardest things I had to do as a mom, as a parent, was allow myself to become a part of the community that worked so hard to embrace us. There were awkward, horrible play dates, difficult times when I had to leave the playground with my screaming son under my arm… All of it overwhelming and scary and isolating.

    Yeah, I can really relate to this post. But here’s the thing: give it some time. Your boys are still young. And I believe that “serious personal attention” your spirit needs, is sure to come…

  • I applaud you for trying to keep up with the play dates. I just can’t do it (although we sort of have the same problem built-in with my husband’s very large family & our children being). It’s just so hard to be an active part of any conversation and still know what your kiddos are up to unless they are in the same room, and if they are, you can’t talk anyway! It’s emotionally and physically draining. And for us, it’s politically dangerous ground, dealing with family with typical kids. Unfortunately, they have been very unwilling to learn and accept that my children’s issues are not the kids’ faults, nor are they mine.

    I NEED to know that other people feel this way.

    love.

  • I hear you–I really do. Plastering that smile on my face as my boys ignore all the other kids or as I jump over the chair to prevent them from eating non gfcf pretzels is never easy. And I feel the relief of it all when we finally leave. However, I have come to accept my place in all of this–We have educated all of these really nice people about what autism is. It’s not something to be so afraid of or freaked out about-my kids are great! They have challenges, but so do the other kids, just different and not as daunting. So sometimes, with the relief I feel as I leave the playdate, I also feel pride. Pride that we did something not just for us, but for other kids that have autism. When these nice people meet them, maybe they’ll understand a little bit more.

  • Yes I know exactly what you mean. I hate being ‘ear marked’ as an over protective mum but it just goes with the territory. I would have phases of going / not going to these gatherings as they were just hard work. I’d find myself getting resentful that everyone else got to chat and completely ignore their children except me…..type of thinking. So I’d stop going……then I’d try again. For me it was always a question of how much battery power I had available. Quite often it was flat.
    Best wishes

  • oh yes, honey, i totally do. i haven’t had the circle of moms be welcoming and inclusive but i do know the separate feeling so very well.

  • YES! i wish i could make the font bigger or scream it from the rooftops .. but YES!

    and that, my dear, is precisely why we are hear, TOGETHER .. stop in any time, you hear??

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