An Update On Ben

Ben is healthier these days than I ever imagined he would be. And he continues to Eat (A Lot) of Good Food. (No, I will never totally take for granted that Ben eats!) But there's more: he reads to himself, he manages Impulses and Frustration a lot more functionally than he used to, and while he is still a Fragile Individual - and deals with relatively high levels of gastrointestinal instability, perseveration, and OCD-type anxiety - the past year has been markedly better than those that came before.

About a year ago, I began adapting a supplement protocol for him based on stuff I was reading from Jaminet, Walsh, and others. I was also able to work through some books with him, designed to give kids some cognitive behavioral methods for adapting to Issues such as he endures every day, and also language to describe (and ways of understanding) the mind-bending Issues themselves. I believe it's also true that Ben couldn't have even made it through those books if the biological underpinnings of his symptoms weren't subsiding quite a bit due to the supplements and continuing Super Clean Diet. It's pretty hard to learn to manage anxiety attacks if they arrive at bedtime every single day! I am truly thankful that these have been better this year.

It's kind of a Bold New Adventure, this Recovering a Child, and there are no rulebooks. We are healing-up a boy who missed out on a lot of early development, too - so it's testament to how far we've come that he is picking up many pieces after the fact.

There are many differences between Ben and a typically developing eleven-year-old, but many of them are subtle, and you don't always notice them when you first meet Ben, or when you talk with him one-on-one. He has definitely gained some "affiliative drive" over the past five years, which is the jargon-y way of saying that he now sometimes Wants To Be With and Learn From Other People (and is even remotely affected by Peer Pressure, which many autistic kids (along with Ben prior to 2010) aren't).

While it's anybody's guess what this all will look like in ten years, and I stifle many regrets (what if I had done GAPS when he was two?? Or before he was born???), I am certain that we are on a Much Better Path than the one down which we were heading in 2010. And while there are many therapeutic approaches to dealing with the symptoms described as Autism Spectrum Disorder, and many of them help many kids, the general prognosis for an ASD kid is profoundly depressing. I am incredibly grateful that we put the effort we did into Getting Ben To Eat - the change in diet is, I think, the single best shot we've given him at growing, developing, and learning to have a better life.

Ben Eating Good Food is a good thing for Ben, and his family, and all the people in the world that will have him around after Jeff and I are gone!

Ben's latest love is the kid's atlas that Heidi and Sven got him for his last birthday. The page of superlative stats ("Biggest Lake," "Highest Mountain," "Tallest Bridge", "Smallest Country") is his favorite. Perhaps it was written specifically for Ben Starling - or children like him.

Ben is still pretty - ahem - "focused" in his interests. He likes making mechanical things out of paper. He loves his garden. He likes reading and listening to fantasy novels for young adults. He enjoys the Harry Potter series, which Jeff is reading to him and Jem. He still enjoys Primitive Pursuits, which has been the one group setting where he's felt both included socially, and interested in the activities (fire building, team building, physical exertion, etc.). This past spring, during the pouring-down-rain that poured down during the Families Open House, Ben lit a one-match fire in said pouring down rain. Which definitely impressed this mother, who was huddling under an umbrella while praying hard that the infant wouldn't wake up.

Ben generally plays best in a mixed-age group, with kids who are around Jem's age or younger. Sometimes I wish I could engineer social opportunities for him that were different, make him show off and initiate wrestling less often, and allow him to learn the finer points of Shooting The Shit, building relationships, and bantering about Common Interests. But the 8-and-younger set takes advantage of another of Ben's strengths: he is very kind and gentle with young kids.

I am often profoundly saddened by the challenges Ben still faces, and how much of his childhood (and Jeff's and my parenthood! and our whole family's existence!) has been abnormally haunted by the reality of his sickness. I am simultaneously stressed and also tired. It is hard to admit this, but it can be very difficult to maintain feelings of Attachment and Bonding with a child who displays much less than typical levels of social reciprocity. I don't love him any less for his challenges - I feel some need to say this - but love actually doesn't have anything to do with it. Of COURSE I love my child!! Insanely and absolutely! But love isn't supposed to make up for unrequited motherly instinct and the desire for ones child to possess higher levels of empathy and social skills. I love my child...and I am often exhausted by his constant questions, annoyed by his constant demands, and...bored by his repeating monologues that often descend into negativity. "Mama, look at this! ...No, you should really LOOK! Look at how they didn't put the gray lines in the right place in this picture! That's so annoying! They should put them in. Why didn't they?" I don't know, Ben, I'll say tiredly, wishing that he would recognize: he's said the exact same thing fifty-five times already today, plus I'm trying to get two chickens into the oven and two other people are talking to me - how could I possibly want to look in his book?! Nobody wants to hear his comment again!

But then he'll be on to asking more questions, and I'll think: This Is Not A Conversation!!

But why? What is this Uncanny Valley of non-conversational verbiage, which is not my child's fault any more than it is a conversation? What makes a conversation A Conversation, anyway?? I struggle with this (and wonder how on earth classrooms (+ the rest of society) will function, once more than a small fraction of children have ASD style symptoms), because I WANT our family to have dinnertime discussions that aren't led always or mostly by Ben's Interest Of The Week. I want to model the social skills that Ben and his younger siblings need to pick up. I want to find out how my husband's day was. I want to make up for all the years of isolation that have made me feel a mite socially inept myself. And I DON'T want to assume that Ben's developmental issues are a character flaw, or inevitable. I want to accept their impact, and believe that he can continue to learn to relate in more comfortable ways.

Yet subtlety does not work for him, and I don't always know how to steer things naturally, so I do the best I can: "It's time to let the parents talk now!" I'll say, or "Now we're going to discuss current events!", or "It's time to change the subject, and not hear about [Ben's] book plot/the way [Ben's] atlas has maps that are drawn incorrectly/Anything Negative!!"

And of course, the mind-bending clincher is that in order to remind Ben not to interrupt, I have to interrupt him. In order to remind him that other people need a turn to talk, I have to tell him not to talk. In order to try to explain how to Be in ways that make other people feel more comfortable, I have to push him out of his comfort zone.


I am so tuned into Ben's challenges that I'm extremely aware of when he does go the extra mile in the social arena (because he is learning and growing - just Differently).

The other day, Ben made one of his zillion daily requests/wishes/complaints/demands/comments, which was at that moment his hope that we could have a Pink Smoothie, instead of one with peach. Every time he asks for things, I have this tiny pinging sensation in my chest (not so bad as it used to be, when things-not-going-the-way-Ben-wanted-them-to-go generally resulted in one- to three-hour tantrums), as well as this tiny sensation of inadequacy. Even though I simultaneously know that Ben WILL ask and ask and ask, and he can't HELP that he wants and wants and wants (and is extremely rarely actually satisfied), there is still this wish I have: to arrange Ben's life and situation and mental state so that he can feel peaceful and satisfied and Good. So every time he makes a request, I think: "If I do this teeny little thing, maybe THIS time it will make Ben happy!"

Anyway, half the time Ben is asking asking asking for things that I was going to do anyway - in this case, I was planning a raspberry smoothie for lunch. So I was glad, as I made the smoothie - at least I knew that Ben would be happy with lunch!

Except, as I handed out cups of smoothie, Ben commented, "Does this smoothie have raspberries it? I don't really like raspberries. They don't make as good a smoothie as other things."

"BEN!" I exploded. "I can't BELIEVE you're saying that! You JUST told me before that you wanted a smoothie that was pink!! You're supposed to say..."

"I mean," Ben said, with perfect timing, "that I am SO glad you made a pink smoothie for me to have for lunch, instead of the other kind!"

I laughed so hard I nearly cried. "You made a JOKE!!" I said. "That was awesome! And FUNNY!"

These are small yet enormous victories.