The “parents of kids with autism” school has a very large cafeteria, and I’m still the new kid, hovering with tray in hand, trying to find somewhere to sit. All I’ve been told by the student who gave me a tour is “don’t sit with Jenny McCarthy and her friends– they’re nuts.” Other than that, I’m on my own.
In my eternal quest to find validation and camaraderie with other “autism moms,” I joined a few email listservs. One of these listservs is primarily a biomedical group. I don’t play for the biomed team but I do sit on their bench (though not at their cafeteria table). We’re members of the gluten- and dairy-free club, after all. It would be a hard, hard sell to convince me to chelate my daughters, though, especially with a medication so potent it can only be used once a month.
Someone in the listserv sent out an email today talking about how she didn’t like or identify with the Welcome to Holland essay. (If you haven’t read it, I recommend clicking through for clarification– link opens in a new window.) I can understand that. I don’t like that essay either, although I appreciate if it’s meaningful for some other folks. For my personal style, I find it too simplistic and saccharine. Beyond that, the first time I reread it post-diagnosis I was still way, way too angry to get to that peaceful “this is just as good, but different” state.
The listserv member continued on, saying that she had found a much better essay that more closely resembled her experience in raising a child with autism. Here is the essay she posted, entitled “Welcome to Somalia” (proceed with caution– if you’re like me, you may find this hard to read):
Welcome to Somalia!
I am often asked to describe the experience of raising a child with Autism, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, “Welcome to Somalia.”
“What the…?” , you say, “What do you mean Somalia? I signed up for Italy, I paid for Italy, by God I am going to sit here and yell at you stupid people until someone explains how the hell a plane with a qualified pilot can screw up and end up in a war-torn African country instead of nice, relaxing, non-conflict Italy! I’m sorry, but you are wrong – this must be Italy. It has to be Italy. I will not accept Somalia when I organised and paid in advance for Italy.”
But there’s been a change in the flight plan. Terrorists have taken over the plane. Now you are in Somalia and if you escape with your life you’ll be lucky, but even then your sanity will be severely damaged.
One important thing is that whilst they’ve taken you to a horrible, disgusting, filthy place, full of war, violence, pestilence, famine and disease you’ll probably survive. It’s just a different place. A very screwed around, hard, emotionally gut-wrenching different place.
So you must now try and outwit these terrorists. Fight for your life and the lives of those you love. You will meet a whole new group of people you would never have met, and most of them you would never have wanted or wished to meet.
It’s a scary, truly unpleasant and very different place. It’s far more exhausting than Italy, more life-threatening than Italy. But after you’ve been there for a while and have managed to escape from the plane and are fighting for your survival you stop to breath, you look around… and are scared witless by the violence, degradation and lack of human rights. You learn to fight for things you always took for granted: education, support, understanding.
Meanwhile, everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. They look at you, thin, drained, emotionally and physically exhausted, covered in bruises and scratches, and living in fear of everyday life.
For the rest of your life, you will say “Yes, Italy, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… as you spend your life mourning the fact that you didn’t get to Italy, you will never fully relate to others the trauma and emotional scarring, despondency, desperation, solitude and terrifying loneliness of Somalia.
This is what it is like bringing up a child with Autism Spectrum Disorder.
So next time you see a child having a meltdown in a shopping centre, or your kid is lashed out at by a SN child in their class, or you witness a mother is sitting on a bench crying as she struggles to restrain her raging 8 year old who is kicking, biting and screaming “I f**king hate you “, you can say to them:
SHIT – is that what Somalia is like? I had no idea.
God knows where this Holland is, because I sure as hell don’t!
Life with autism – not a bloody holiday!
1) Clearly, the author of this essay was trying to come up with the worst place in the world and landed on Somalia. There’s a big long list of reasons why that is problematic, and I am nowhere near articulate or educated enough on international relations, racism and cultural sensitivity to be able to describe all of them. I can say, though, that it seems in particularly poor taste, although I imagine it accidental, that the author chose a country whose children seem to be experiencing disproportionately high rates of autism.
2) My children are not metaphorical airplanes that have been taken over by terrorists. The signs were there right in the beginning, but I– even with an early childhood degree, a fascination with autism, and plenty of experience– just didn’t see them. (You can see a video of my girls at eight months old here. Notice that Chicken, on the right, does not respond to her name. Hammy gives you a big ol’ smile, though.) We had a skills regression that slowly happened between 14 and 20 months. That’s part of my girls’ neurology. It was unavoidable. It’s not a monster that stole them in the night.
3) “…they’ve taken you to a horrible, disgusting, filthy place, full of war, violence, pestilence, famine and disease…“
When people say things like this, when they nod their heads in ferocious agreement, do they realize they’re talking about their children? Is this the message we want to send to our kids about what it was like to raise them, be with them, love them? There is nothing– NOTHING– wrong with saying “This is hard. This is intense. This is sometimes heartbreaking. Some days, I just don’t feel like I can keep up. I want to talk to other people who understand some of the specific hardships my family faces.” I hear you and I understand you, other “autism moms.” I do. My kids are still little, and I know it gets much harder from here. I know it. If my girls aren’t talking, if they run around a lot, if they make funny noises, well, they’re not even three yet. I know the world will look at them with a great deal more scorn and scrutiny when they’re eight, or 13, or 20, if they’re still doing things that are incongruous with the sort of rigid social rules we’re all expected to follow. Life will be harder then than it is now. I know those other parents understand things that I don’t, yet.
But I will never use these words. Ever. I will never talk about raising my children as if it was a great burden that was heaped on my shoulders. I will endeavor to always put them first in my mind– how is this situation affecting them? How do they feel about themselves? Are my words and actions showing them something different than what I’d like to believe they’re seeing (behavior is communication)? Am I saying, “You’re so special and wonderful,” but then complaining to my friend later on the phone in the next room about how autism is the worst thing ever to happen to my family? They hear you, even the subconscious messages you put out that you don’t hear yourself “say.” If it’s in your heart, it will come out eventually.
4) There is not a word in this essay– in either, actually– even hinting at the personhood or perspective of the disabled child. Not a word.
5) This is what it is like bringing up a child with Autism Spectrum Disorder. NO. Do not speak for all of us! Don’t generalize this horrible message and disseminate it to your friends with neurotypical kids so they can finally appreciate the incredible “warrior mom” that you are, getting up daily to slay the dragon that is your autistic child. Please. Let your experience be whatever it needs to be, but don’t tell everyone else that we all agree with you.
I’m a weird combination of loudmouth and introvert, so this email predictably led to me finally having to say something (respectfully; it’s a local group and I’m not looking to make any enemies), then stressing out all the next day as replies slowly trickled in. The short version is that one person quietly shared my outrage, and the rest felt very strongly that I just don’t get it yet and I will eventually. I don’t think the conversation is going to go anywhere, so I’m dropping it now.
It’s infuriating and upsetting to me that someone wrote this essay, but the real issue is that there was a need for it because so many parents out there feel that it represents their experiences and the way they wish they could communicate those experiences to the world.
I don’t know how to end this. It’s such an unsettled issue, with so many people hanging in the balance. We all have feelings and experiences to process, and it’s hard. It is really hard. So I’m just going to end with a few photos of my girls doing what they do.