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.
A big YAY for the group support.
My sister’s oldest is on the spectrum, and I will NEVER outlive the guilt of not taking her first suspicions seriously. First, I know she thought long and hard (and researched) before she ever brought it up, so she had been living with her fears long before she said anything to me. And what did I do? I went into full-on big sister mode “it’ll be okay. It’s not that bad. It’s not like that” Um, yes, it was. I didn’t think she was making things up, but I wanted an easier life for my baby sister than what she was getting. So my “it’ll be okay” was more like a prayer than an insistence. Which is still a lousy excuse for offering such lousy support.
And, uh, oops, that’s a LONG way of saying that I’m glad you’re getting what you need.
Let your guilt go, babe. I’m sure your sister knows your response came from love and she wouldn’t want you holding on to guilt over it.
What matters most is that you support her now, which I know you do. 🙂
I love reading your blog! Always makes me want to run across the street and talk to you. As I sit in the house w/my boys on this rainy spring break dealing with the fact that Landon ONLY wants to be home and telling him that we are going to go to the store is like telling him his dog died, and of course Justin being opposite is more then thrilled to go out and do something. So for the most part I end up staying home held prisoner by my 6 year old!
Thanks for you honesty when you write…I think for me reading your blog always gives me some of that validation you are talking about.
It may be our destiny to be neighbors who email. 🙂
It’s so hard when they want different things. Ugh.
What “normal” is or means is something most parents struggle with to some extent. I would imagine that struggle would be exacerbated by something like an autism spectrum disorder. (((hugs))) on getting through day by day. I’m glad the group can offer you support and validation!
I have an online friend met through an online book club whose little boy, Charlie (4), has autism. She used to blog about it at: http://www.millie-keepcalm.blogspot.com/ but hasn’t for a while for various reasons. Her husband who is in the hospital waiting for a heart transplant wrote quite movingly about Charlie on his blog today: http://paul-betros.blogspot.com/ It’s a struggle.
Wow, Karen, that is a moving post. Charlie sounds a lot like BamBam. FGBVs to Charlie and Paul and especially to Camilla, who is slogging through the days valiantly while I’m sure she must be out of her mind with worry over her husband. I choose to believe they will all make it through in wonderful shape.
My oldest had a pre-natal stroke, so his physical issues were the most apparent when he was born. We knew he had extensive brain damage, so he wasn’t even diagnosed as PDD-NOS until the seventh grade. Around that time I read an article about Asperger’s Syndrome, and it was like looking at a snapshot of One. After our stint in Early Intervention I stopped going to support groups because I had another baby, and then another, and there wasn’t a group for “mothers of children who have right hemiparesis and learning delays.”
When Four started exhibiting different, but similar, behavior a bulb went off. Ah ha! I know what this is! But I was so used to going it alone I still didn’t seek support. My advice is GO TO THE GROUP! You’re right-you’ll learn so much, you’ll share so much, you’ll feel better. It’s a good thing, and I’m so happy for you.
Hugs from a fellow comrade in the testosterone trenches.
You are my comrade in penii. 🙂 That still cracks me up. You are an amazing woman. Mother, too, but woman in general.
Different diagnosis; same wood-gnawing fun. Come on over sometime and admire the remnants of the rails on the upper bunk bed where my son has slept for the past several years 🙂
Yay you for busting through the group-avoiding barrier and finding something useful! It’s amazing what a relief it can be to tell someone your horror stories and have them respond as though the stories are not only part of the normal routine, but even kind of funny.
Slightly different but similar. (And it’s long. So get a beverage or a snack.)
Empress had severe depression in high school, but her issues started way sooner. We got her help, and more help and then some other help. It was horrifically lonely to go through (even with Dan standing right there next to me) and the self-blame was nearly crippling. At one point I sat across from her on the couch, we were both sobbing. I looked her in the eye and thought “fuck. My poor gorgeous baby will never lead a normal life. And we’ll have to take care of her FOREVER!”
You know from my blog that she is doing REALLY well. A few set-backs, but mostly she’s independent and coping with far more than we ever thought she could. Well, except that she may be moving back home soon. Hopefully NOT! But who knows?
All of this just to say, you are an extraordinary mom doing a damn fine job. When we can share our stories they become easier to carry then when we do it all alone.
Thanks for the post dear one. It helps me to understand what you are feeling and what you need. I totally agree with your seeking out the support group and can understand how helpful the members can be to you since they have all been there or are in the midst of it all. Keep moving on..I too am so very thankful for ALL of your friends that you named. Together they offer you as much peace as you can have with all that is going on around you.
Congratulations on your fabulous new blog! Sorry I missed your “grand opening”!