Susan's Blog

Tuesday, April 10, 2007

Strangers in a Strange Land

Here, by the grace of God and an inside straight, we have a personality untouched by the psychotic taboos of our tribe — and you want to turn him into a carbon copy of every fourth-rate conformist in this frightened land!
–Robert Heinlein, 1961

Oy, go and have children.
–My Great-Grandmother, “Bubbe,” Sarel Wolfson

Little B is on his playdate with A!! I have been nervous for the last hour, just hoping it works out. I know I should relax, and get a life. I just want him to have a friend or two, I don’t want him to have a hard life, to be lonely or sad. I just hate it when he asks me to get him a playdate and I just know the preferred child is going to be unavailable. But as I’ve said, it will do no good to force B to be in PALS (the singing/acting group at our school that sucks up all the little kids on Mondays and Thursdays until they are old enough to chafe under the strictness of the hours and the director). It is no use suggesting T-ball or soccer or anything remotely resembling a sport. But it is my job to make sure he has enough social skills to get through life okay, and since he cares about having friends, I use that as my way in.

I coached him a little about the upcoming playdate with A yesterday: “Now Beastie, you know that when you’re with A, you should probably try not to joke about anything that’s about him; that doesn’t go over too well with him, right? He’s kind of sensitive.”

“Right.” In a robotic voice. He goes back to his pad. “Hey, Ma, you know I think the lava guy should have crystal shards in him. I think they all should.”

WTF?? “Yeah, probably.”

It is so hard to know what is on his mind, because he hates to talk about feelings. He hates to talk about anything that he did not think to talk about. Simple conversation, with a give-and-take, is just not his cup of tea. He is not comfortable in the realm of emotion, either, except anger and happiness. His therapist has helped him with this considerably, however, and I think that development will take care of some of it, too.

Natural development is totally underrated these days. Everyone wants to get in there and force progress out of their kids, ASD or NT. They have to learn tennis before first grade, so they don’t pick up any bad habits. They have to do piano by age six, or it’s too late. Math facts memorized by age eight. And don’t forget Early Intervention and the Marvels of the Elasto-Brain of the Five and Under Child! Therapy, therapy, and more therapy! Toilet train by two. 80 hours of ABA a week when they’re 9 months old, that will make ’em snap out of it! Uh, Oh, we only did 79 hours with Nat! Oh, that’s why!

(Okay, okay, I’m just joking!!! Sorry!!!)

Some of my critics call me old-fashioned because I champion acceptance of our kids’ quirks (Hello, Making Peace With Autism) rather than forcing them into the narrow round holes of Mainstream USA. But listen, I really do understand the impulse to push, push, push! I, too, tried a bunch of things with Natty when he and I were younger, (dietary change; Floortime; we had him tested for Celiac’s disease and gluten/casein intolerance; we were on a waiting list for that pig hormone everyone went ga-ga over in the 90’s, but then Nat was determined not a good case for it. (I don’t know why, I think because he has never shown any G.I. problems, he’s as regular as a clock); sensory integration; and of course, ABA ad nauseum.)and mark my words, the trends come and go. Sometimes I get close to trying one thing or another but then I start to get skeptical again and to feel like it all sounds like it could be anything that causes the positive changes cited. This is what happened to us over the years with all the well-vaunted approaches we tried.

But most parents get a feel for what works for their kid over time, and it can be any of the above or more that works. It could also be a better attitude on the part of the parents and teachers that help the child do better!

And guess what worked best for Nat? Getting him into sports! How’s that for irony? I always say, “At least I have ONE NORMAL BOY!”

Progress is what you decide it should be. I think Nat is whizzing ahead in lightyears these days. Yesterday I was scolding Ben for wearing the same pants for two weeks (yes, that is what I said), and he protested my demand that he change. Nat whips around and looks at Ben’s annoyed face, and a big grin appears on Nat’s face. He starts rocking and smiling and then laughing a little. I said, “Natty, are you laughing at Ben?”

The smile got even broader. Oh my God! Ned and I looked at each other. Whoa, Nat! It was definitely a case of Nat being a nasty older brother, glad to see his sibling (with whom he has a difficult relationship) a little unhappy. Thank goodness Ben didn’t see! I guess that is progress, too, that they didn’t end up fighting. He just sighed and went upstairs and changed his pants.

Mean Nat! Resigned Benji! Now I’ve seen everything! But to me, here in Bizarro Land, that is real progress.


you know…”back in the day” kids were just kids-they hung out at home-did stuff with their folks-had family gatherings, and that was life as they knew it. there were not all of these activities-not at all. there was softball or baseball, but not much of that other stuff. those kids all turned out ok. (as far as I know it). I have my 89(!) year old aunt come and stay with me every year for like 2 months. she loves to tell stories about when she was growing up. it was more about family back then-and neighborhood stuff. you are a great mom susan for loving your family enough to WANT to be with them and hang with them when a lot of other moms cant wait to pick their kids up from school and get them to practice and then home for homework and then dinner and bed!!! I am sorry-I never bought into that way of life. the kids will be grown up and gone one day. cherish your time. dont obsess over playdates because they have them every day a school. recess. lunch. yes yes YES friends are important but family is more important. they will have you their whole lives. these connections they make in school are fun but how many friends do YOU have that you made in grammer school?

— added by Anonymous on Tuesday, April 10, 2007 at 4:17 pm

do you guys have a family pet? just a thought….little boys love dogs.

— added by Anonymous on Tuesday, April 10, 2007 at 5:26 pm

I agree, it’s progress.

When Chuck and I realize that an interaction between our kids that we are dealing with is not autism-based, but it is just “little kid stuff”, we feel like we are making progress.

Every parent has to deal with the regular sibling stuff, but most don’t have to deal with autism every single day.

Dealing with regular ‘kid stuff’ is like going down to DEFCON 3.

— added by Mom on Tuesday, April 10, 2007 at 6:46 pm

Wonderful! I had a friend gleefully tell me her ASD child LIED.She was thrilled! Only an autism mom would understand that one! Those glimpses of our kids are magnificent moments aren’t they? We’re so lucky to be able to appreciate teensy things that parents of typical kids overlook completely. Every day with my girls can bring a small party to which I say “Let’s have a cupcake.” GFCF of course. 😉

— added by Kim Rossi Stagliano on Wednesday, April 11, 2007 at 9:55 am

Oh what a lovely post.

I cried tears of joy the first day Patrick cried because his feelings were hurt (not that exactly but the best way I can describe it).

— added by mumkeepingsane on Wednesday, April 11, 2007 at 6:03 pm

I loved your book! I work as an assistant in a “functional skills” classroom. I laughed and cried as read your book, soundednvery familiar! Your book is being passed around as I type. What an encouragement you are!

— added by Anonymous on Thursday, April 12, 2007 at 3:25 pm

Hi, Susan

I am a regular reader of your blog and respect a lot of what you say. And, yes, I identify with what you are going thru.

There have been some instances in your writing when I have gone HUH??? When I get negative comments posted on my blog, I take them to heart and try to take it with an open mind. I hope you do the same.

Quite often I find you choose one son over the other. I found a comment in your blog that blew my mind; “At least I have one normal one!” It seems that on good days you accept your “atypical” son and on bad days you don’t, and make your “typical” son look angelic. I also think that you are hovering over them too much. You need to let go a bit and let them breathe. The only way that he is going to practice his social skills and learn about the world is by letting him out in it. I almost think that you are really ashamed of him and get embarrased when people look at him differently.
The reason you never knew he liked sports is because you are hiding him. Special Olympics?

Our son has PDD and we couldn’t give a god damn what the neighbors think-and we are proud of who we are. If someone read your blog to him, how do you think he would feel? Show him as the person he is, the capabilities he has and the triumphs he has made-don’t hide-yes, family is extremely important, but so is exposing him to the world.

I don’t think you have as yet made peace with Autism.

— added by Anonymous on Friday, April 13, 2007 at 9:47 pm

Regarding a family pet: we are actually watching a tadpole for a friend now, so it is our first experiment with a pet! We are obviously starting small.

Latest Anon: I did read what you say with an open mind but there is nothing in it that I can connect to at all. I don’t think you understand me in the slightest. If you read my book, perhaps you will understand how my feelings towards Nat and all my other sons have evolved over time. Peace.

— added by Susan Senator on Saturday, April 14, 2007 at 6:29 am

Anonymous: our relationship with our sons is extremely complex. Susan describes different facets of it here and in her book, but there’s no way she can convey all of the richness of it.

When she quips “At least I have one normal son”, it is a quip. She is using humor to drive home a point (that everyone is an individual, and that it is a mistake to see Nat simply as a boy with autism). We cherish each of our boys’ individuality, and we also carefully shepherd them to find their place in the world. Don’t mistake witty presentation for the entirety of our parenting.

As for making peace with autism: the title is less a statement of a goal achieved than of a mindset to constantly strive toward. It is not easy raising Nat, and we are constantly and continually working toward the best balance possible. He continues to change, and we have to continue to adapt. That process will not always result in positive feelings.

Part of Susan’s gift as a writer is the ability to put the whole of the experience into words, the good and the bad. Other autism writers present an unfailingly upbeat attitude toward their children, and if that is genuine, then I envy them. Susan and I do have difficult times with Nat (and our other boys). Susan writes about those times, and I think connects with readers because of it.

— added by Ned Batchelder on Saturday, April 14, 2007 at 7:32 am

Hi Ned

I thought your comments were very interesting and I do agree with a lot of what you said. I must say that you write beautifully. I am going to say this will all honesty-I was able to connect more with you and your writing than Susan’s.

Believe me, I know about raising a child on the spectrum-it is tiring and grueling. She has a dry sense of humor about her, and that can be hard to convey sometimes in writing.

When I read her article in the Globe magazine last Sunday. She might be too honest sometimes. I would never have made comments about his “private moments”. In my opinion, a little too far-I wouldn’t have been proud of writing that piece.

I do know that she is a woman with quite the following, but there are others just as rich as her. She is a person who is more gritty in her words, and some people like that. In some ways it makes for great television. In some ways I respect your wife, and in many others I do not.

Why did you write back and not her? Was she unsure of what to say? Was she stunned that someone did not agree with her altogether? Next time, allow your wife to use her own words and not yours in defense.

— added by Anonymous on Saturday, April 14, 2007 at 9:43 pm

Susan, I just realized that you did write back to me-I just didn’t see it.

You have to remember that every family situation is very different. If you are a gifted writer, than you should be able to accept what others have to say and connect with them in some way-that’s what makes “good writers.” I think I made you angry that I wasn’t necessarily on your side- but that is what makes us human beings-all having different opinions.

We can agree to disagree

— added by Anonymous on Saturday, April 14, 2007 at 9:57 pm

I don’t think she is ashamed of Nat in any way. If she were ashamed of him, why would she write a book about him or write about him on the internet? I love her posts about her boys, and I love hearing about Nat. I love reading about all the challenges as well as the good times. My son has moderate autism with global developmental delay-he goes days without speaking a single word, or when he does speak it is one word repeated several times, and it is a total nonsense word. I am not ashamed to take him out in public,but honestly, it is draining some days. Maybe Nat is the only one of her sons that likes sports. I think she is just being honest with her feelings.

— added by Amy on Sunday, April 15, 2007 at 1:21 am

Anonymous: All families are not alike. You said it. I have also said it; it is all over my website.
I don’t know what it is that you wish to “agree to disagree” over; it seems that what you want is for me to agree that I have not made peace with autism, and that I favor some of my children over others. I will not agree to that. You are wrong. You can think what you want, of course, and so can I. And I think you are trying to make points about me, not about an issue, and therefore I do not have to accept what you say. Thanks for your concern but I don’t buy it.

— added by Susan Senator on Sunday, April 15, 2007 at 7:56 am

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