Better You Than Me

When it comes to the spectrum, I’m maybe two degrees more enlightened than those who think all people with autism are savants that can count cards and toothpicks. (To be fair, Dustin did give a strong performance.)

My ignorance is no accident. People don’t gain specialized knowledge of hardship unless it’s necessary. Why would we?… to be well rounded? I mean, how much do you know about, say, Legionnaires’ disease?

As the father of a (neuro)typical 18 month-old boy, I am frequently astonished at how depleting and difficult parenting can be. And that’s with my wife doing most of the work. Maybe I’d be better equipped to handle parenthood if I were a 16 year-old Mormon fundamentalist prairie mom. But that comes with its own baggage.

So how do you cope when your child has autism? It’s not a rhetorical question. Parents untouched by autism are terrified yet preoccupied by its prevalence. It is perhaps unfair to show an academic interest when it’s not my kid flinging feces on the wall. But what do you want to me to say? “Better you than me”? (People with more tact than I will usually phrase this sentiment as “There but for the grace of God…”)

Basically, I stand in awe of the impossibly high hurdles that you must clear. Daily. Hourly. This minute. None of us can really fathom the patience and resolve required to raise a child with autism. We don’t know how to start the conversation, mostly owing to awkwardness, ignorance, or superstition. And frankly it’s hard to even tread here without sounding like an emotional tourist.

As you’ve read this far, I’m hoping you’ll address a few burning questions. They are compiled from near-complete ignorance. But there ought to be a way to gain perspective without fear of tripping over taboos.

Your answers will not herald an era of understanding. They will not put an end to people’s silent disapproval or blatant staring. But you’ve long since learned to ignore fools. These are just for me. Accordingly, I’m calling this brief questionnaire:

“Stop Staring and Finish Your Fucking Onion Blossom”

1. What do your non-nuclear family members fail to understand about your child, despite repeated explanations?

2. If you could fire a magic bullet at anything related to autism, where would you aim? E.g. health insurance companies, educators, spouse, legislators, me (although technically I am unrelated). And don’t get too trigger happy, Rambo – you only get one magic bullet.

3. Is there a hierarchy among parents based on where along the spectrum your kids are?

4. What does your peer group commiserate about that you’d never share with outsiders (were it not for the relative anonymity of the internet)?

5. Which parents do you look at and think “Better You Than Me”? E.g. parents of a) paraplegics, b) Siamese twins, c) young republicans, d) albinos. Hmmm… the question, while sincere, could be phrased more sensitively. But you’re an expert at handling inappropriateness.

Use the comments section to answer any or all of the above. Because y’know… you have so much free time on your hands.

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11 Responses to Better You Than Me

  1. Amanda @ Confessions From HouseholdSix January 13, 2012 at 2:00 pm #

    Disclaimer: These are the views of one parent. Others may vary. I’ve also been awake since 4:45am. I have 2 boys diagnosed on opposite ends of the spectrum.

    1. The extended family doesn’t understand what we deal with daily. The sensory issues, the OCD, the meltdowns, the tantrums, the lack of sleep even though our kids are way past infancy, and, and, and. It’s not just autism though. My younger son also has multiple food allergies, and the family is all “WTF? No one else has food allergies. Are you sure?” No. we went and had him sit for 20 minutes with serum on his back that made him itch because it’s our sick and twisted way of having fun. We’re obviously making it up, you know. As far as autism, it’s the routines. They don’t get that in order for my kid to sleep we have to brush teeth, do meds, and change into pajamas while I stand on the left and my husband on the right while the moon is a waxing crescent on the 4th Saturday of the 6th month, while singing Itsy Bitsy Spider…you get the idea.

    2. Legislators. If they’d remove their heads from their asses (I’m assuming I can say that since you said fucking earlier), then the health care companies and schools would be forced to do more because it would be LAW. There are already laws, but they could be WAY better. Of course it sucks anytime you have to invoke said laws to get results, but that’s a whole other issue.

    3. I have found there isn’t so much a hierarchy, as there can be cliques. This doesn’t seem to happen so much in the online community as I’ve seen in our offline lives. My kids aren’t autistic enough for the autism support groups because they’re verbal, but they’re not “normal” enough for those kids either. It’s total lose-lose.

    4. It’s not so much outsiders that I censor what I share, but other autism parents. Some are gung ho on the GFCF (gluten free/casein free) diet. Some swear by Feingold. Some are convinced vaccines caused the autism. Some think it’s environment and pollution. Some thing it’s genetics. Some swear by DAN. Some prefer ABA therapy. I fall somewhere in the middle of all of that, so it can be like walking a tightrope depending on who you come across. I’ve found outsiders are usually just interested to learn more, and they don’t usually have an opinion in that case. The ones who do have opinions are the ones who usually think we’re just sucky parents with bratty overindulged kids when we’re out in public.

    5. You know, there are a lot of parents I think, “better you than me.” I’m OK with where we are right now, and our family is happy. In the interest of appropriateness, I’ll continue to keep those “better you than me” thoughts in my head.

    I hope at least some of this helps to answer the questions you had.

  2. Jacqueline January 13, 2012 at 7:56 pm #

    1. It’s hard to get through to non-nuclear family members that we are not encouraging or “giving in” to our kids’ inflexibility and quirks.

    2. I’d definitely target pediatricians. They should be able to recognize the signs of autism by 18 months. Too many of us went to our pediatricians when we thought something wasn’t right only to be told that our kids were late bloomers. Pediatricians have a tendency to wait until child is 2 to sound the alarm. Delays caused by autism are obvious by 18 months – and in many cases by 15 months. If I can see them then my pediatrician should be able to see them too.

    3. I wouldn’t call it a hierarchy. The truth is parents of sn kids mostly come into contact with parents who have kids like theirs because of the schooling they receive, etc.

    4. We commiserate about judgments by people, i.e. friends, family members, strangers, who don’t have kids with special needs.

    5. I can’t answer that. The truth is I had those thoughts about autism until it came into my life.

  3. jillsmo January 14, 2012 at 1:51 am #

    1. You begin this parenting experience with a certain set of expectations, and then autism comes along, smacks you in the face and makes you change. As such, you have to adjust your expectations about this child, because he’s not going to do what you’re wanting him to do. He will not show you his nose when he’s 18 months. He will not tell you if he likes trains, at 4 years. He will not tell how school was today, at 9 years. Autism will not change for you, so it is your responsibility, as a family member who loves him, to change yourself; for him.

    2. That’s a hard question, because it’s not specific enough. Would my bullet make my kid like all the other kids? Or would my bullet fix things that are actually fixable? I’m going with the second one, and I will say that society should accept that the upbringing and education of each child is individualized, and as such, public education should be fully funded (perhaps at the expense of wars or other such expensive things). All kids should get an individualized education, starting from birth, that meets their specific needs, regardless of how much it costs and how long it takes.

    3. “Hierarchy” is completely subjective. Do you think you’re better than me? Go fuck yourself.

    4. This life sucks and I wish it was easier. I wish my kid didn’t struggle. I wish my kid was like all the other kids. Nobody will ever admit that they think that, by the way….

    5. That’s not really fair. However… I’m glad my kid isn’t terminal. He’s going to live a long life with his condition and it’s not going to kill him. I can deal with that.

  4. Kim January 14, 2012 at 2:11 pm #

    1. My feeling is that my family (and I include my husband – The Boy’s stepfather in this category) largely thinks that The Boy can control his behavior, but simply chooses not to. Sure, they notice that he’s a bit odd, when compared to other kids. He says weird things, and makes inappropriate, and loud, comments. But I don’t think they realize HIS struggles, and how much of a monkey wrench is thrown into his world when they spring surprises on us (like light night requests to watch the grandkids at our house – requests that come hours after The Boy is sleeping). He often does not respond well to these surprise visits.
    2. My bullet would be aimed at the hordes of people who have not bothered to inform themselves about autism – and their way of excluding The Boy from possible friendships and relationships. Clueless, that’s what they are. Ask, people – I’ll tell ya.
    3. When you’ve met one child with autism, you’ve met one child with autism. Even if Child A and Child B both share a diagnosis of ASD, for example, there is still great variation of sensory issues and how the autism manifests itself in each child’s life. The parents of non-verbal kids wish their kids would speak, and the parents whose kid talks about one particular subject for six hours without fail would just like their kid to shut up (or maybe that’s just me).
    4. We share frustration with all of the institutions we deal with – doctors, schools, service providers. We hate that our kids are teased, bullied or ostracized. I don’t have any people IRL who are close to me who are deailng with this adventure, so if I didn’t find comrades and confidantes online, I’d be on sad mofo.

    I also think we don’t share the positive stuff enough. The Boy and I have met some pretty amazing teachers, therapists, aides, etc. – if not for the diagnosis, I’d have missed out on meeting some pretty cool people.

    We don’t discuss our children’s futures, except to say that we cannot die, because nobody would love them the way we do – we already are trained to jump through the hoops to help our child, and are fighting each day to make sure that our children get a fair shake.

    I wouldn’t ask that my son could wake up one day and be perfectly normal – I happen to love his delightfully wacky way of looking at things. I would wish, however, that things get easier for him (and me) in the future.

    5. I’m not better than anyone. All families have challenges – my family just has a handy name to pin our troubles on. I am grateful that my older children did not have autism – I was a young and impatient parent; it’s much better that my son was born when I had the maturity and patience and strong will to hang in here for the long haul.

    Now go kiss your normal kid as we kiss our perfectly imperfect ones, let us all join hands and sing Kumbaya.

    • Daddy Confidential January 19, 2012 at 5:04 pm #

      Hi Kim! Regarding the “hordes of people who have not bothered to inform themselves about autism”… how much did you know about autism before it entered your life? What should compel others to learn about it?

      I find people are mostly ignorant and selfish creatures. Accordingly, it seems unfair to single out their ignorance about the one issue that dominates your life.

      I don’t mean to sound harsh, especially in light of how horrible and painful exclusion feels. But I think society (as opposed to individuals) bears the larger responsibility to make all citizens feel valued and respected.

      Hmm… then again, I did say it was a “magic” bullet. So on second thought, screw those insensitive morons.

  5. Amy (@LLA_Princess) January 14, 2012 at 2:46 pm #

    1. Depending on which non-nuclear family we are discussing I’d say there is a lot they don’t get. For some it’s understanding that “when things change” it can be a huge meltdown and that they wont just “snap out of it.” That just because we are their parents doesnt mean that they will listen if we tell them to stop perseverating over things, eat vegetables, be quiet, stop stimming, etc. That just because my child doesn’t speak to you doesn’t mean he doesn’t understand you. Or that he needs gifts that are for toddlers.

    No I think the biggest thing they don’t get is that they can’t ask us when they have questions about our kids.

    2. I think I have to agree with Jill’s #2. I mean I wish there was more consistency in government programs and assistance on a federal level. I see some states have coverage and assistance that we don’t get here. I just hate feeling like there are options out there that we cant afford or are not available where we live. It makes you feel like a failure as a parent. And I think education on what true autism acceptance is is key in their success.

    3. A hierarchy set by who? I think every child’s need is different. Just because one of mine is more “high functioning” than the other doesn’t mean his need is less, it’s just different.

    4. I hate feeling like a failure and trying everything that everyone says works and yet it doesn’t work for my kids. Why is this so hard? Why do my kids have to struggle? Will they ever have friends? Will they be ok when I die?

    5. I think there are always going to be people and situations that are better and worse than ours. Comparing is what i am always going and it drives me to the bring of total insanity. I know this doesn’t answer the question, but I only can say I am better off than those that are unable to have children. Because no matter what the struggle or situation, at least we got to experience being parents to 2 amazing kids.

  6. Mom of two on the spectrum January 17, 2012 at 9:24 pm #

    1. What do your non-nuclear family members fail to understand about your child, despite repeated explanations? – Everything. Maybe that’s not fair, but it’s pretty accurate. Their desperate need for structure, the resistance to any sort of change, why my kids potty trained so late, sensory challenges, food aversions, why I choose (or don’t choose) various forms of discipline. The biggest thing is, they just don’t understand that parenting my kids is in a constant state of flux. I am always trying to improve how I parent. My mother especially seems confused, when during one of her bi-annual visits, why things are not exactly the same as 1,567 steps ago.

    2. If you could fire a magic bullet at anything related to autism, where would you aim? – Educators, educators, educators. The schools have no idea of the diversity that autism contains. Between my two children, you would never guess they have the same diagnosis. Yet the school wants to make the exact same “accommodations” for both of them.

    3. Is there a hierarchy among parents based on where along the spectrum your kids are? I do not really feel like there is, but maybe that’s because I am at the top of whatever hierarchy I’m involved in! Hahahahahahaha!!!

    4. What does your peer group commiserate about that you’d never share with outsiders? I share everything. I will use any “teachable moment” that I am presented with. Can’t speak for others.

    5. Which parents do you look at and think “Better You Than Me”? – I have honestly never thought that. After being judged for my struggles (perceived or real) as a parent, I cannot judge another parents struggles. The situation that looks 100 times as hard as mine is usually handled with 100 times the grace that I possess.

    Thanks for being interested!

  7. Kareen January 21, 2012 at 6:48 pm #

    Let’s see. 1. In the beginning it was hard for all of us nuclear and otherwise what was happening. All the behaviors weren’t something we had either seen or heard of. Everything was new and misunderstood. However, as time went along, everyone looked to me when he would attempt to talk to him. I had to express to very few, he is still “him! Stop looking at me, and answer the boy – yourself”

    2. I would fire a magic bullet at society that got them to magically understand that this isn’t something to be feared or to be pitied. It’s actually quite amazing and this so called epidemic is actually producing some really fascinating people. Yes they need some supports and training regarding self regulation but make no mistake, they are INCREDIBLE.

    3. I don’t even know if there is a hierarchy. I think there would be with any type of child. There are always going to be insecure people that feel the need to project their shit onto their children and others. Who has time to pay attention to them when there are far more amazing things to focus on? *Boring*

    4. Peer group (for me) = all people. I would attempt to share my passion and belief that despite being accused of being pollyanna, i find beauty in all people autistic or not. The autistic folks I have met have more depth, in a different way than neuro typical folks. I look for and always find joy. It’s there, it’s just a perspective shift and hard work.

    5. The kids that are carrying iphones and attaching “ah” at then end of all of their sentences. Mom-ahhhhhhhhhhh. The snotty, self-indulgent, seemingly soul-less little buggers that need a little more one on one time and a lot less freedom. IMHO of course. Toughest job in the world is to teach empathy and compassion, but it’s worth all the effort. Better you than me, folks.

  8. Rev. J. C. Mitchell January 21, 2012 at 7:58 pm #

    Well answering these questions without reading responses first, I wil read them later, just didn’t want to be influenced in answering. Before I respond to the questioning I must say to the author, I would rather one honestly say, better you than me, then by the grace of God. As a minister I would be insulted to think that grace was what got someone out of raising a child with autism. Grace is equal for all, even those with difficulties. So I appreciate your statement “better you than me” as more honest and tactful.

    1. They fail to understand how heart wrenching it can be and that we the parents are perfectly fine with his unique needs. All parents mourn the loss of the ideal child, we do it in the toddler years and others it seems to happen in the teen years. Thus do not say it will be ok, he will be fine, we know that but we are aware that fine may not be the fine you are refering to.

    2. While I don’t like the imagery of a bullet to solve something, I would want the whole healthcare system overhauled not just for people with autism, but everyone.

    3. Hierarchy? I don’t think so as each child is very unique. Honestly those with more money are those who can verbalized more, but they are so concerned with others from their experience. Within the community I do not experience hierarchy as per severity.

    4. Paper work, payment, & people roll their eyes of our hard time

    5. You to anyone as it is better they be them then I. As per the nature of the question, I believe better you than me to Christians who do not understand what it means to follow the one who demonstrates great power in weakness, and since I do I do love them as well.

    An issue I have with the community is the lack of progressive theology writing on it but you can find my reflections on dmergent.org, just search my name and the majority are on autism.

    Thanks for being curious.

  9. Jill February 21, 2012 at 12:29 am #

    I don’t know how this will be received by you, the blogger, or those who have left comments, but there is a VERY interesting article I read recently about a treatment called NAET and its help with autism. NAET was developed by Devi S. Nambudripad, MD, PhD, L.Ac., DC, in 1983, and since then, she has trained over 10,000 licensed medical practitioners in the protocol. Go to NAET.com to learn more. I have been treated with NAET for my food and environmental allergies, as well as some other issues, and have had 100% positive results. Here is the link to the article about NAET and autism: http://finance.yahoo.com/news/effective-treatment-autism-naet-130000459.html

    I hope this information proves helpful to some!

  10. Laura May 10, 2012 at 3:20 pm #

    1. He’s not just a naughty, stubborn kid.

    2. Educators

    3. I don’t know, but I know their is great respect. For example I am not going to “complain” to a mom who’s child is non verbal about my son with Aspergers needing to wear the same clothes everyday. I feel that would be disrespectful. I would rather look to that more severally challenged mom for inspiration and to support her.

    4. Generally speaking, I think we feel like we “give in” to our children to avoid meltdowns. It’s hard to make outsiders understand.

    5. I think all listed, besides little republicans, lol!! Have a much more challenging experience than the parents of kids with aspergers. Outsiders tend to be more tolerant when they can actually see the disability.

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