Susan's Blog

Saturday, March 10, 2012

How Hard Should We Try?

I picked up Nat for Special Olympics State Games this morning and I noticed he had a red mark on his cheek. His caregiver thinks it happened from shaving, and so do I. She likes him to shave much more often than we did; Ned and I are terrible with that kind of grooming. It comes from years of choosing our battles, when so much having to do with Nat was hard, and so it felt like stuff like brushing hair could take a backseat. Toothbrushing is cursory, shaving is spotty, flossing — forget it. Yes, that’s right. I’m not proud of it, but something had to give sometimes. I do doctors, dentists, and group homes but I just can’t do everything.

That’s why I didn’t do The Diet for Nat. I tried, but totally half-assed, like for a day. I never did Auditory Integrated Training, either, or neurofeedback, or, God forbid, chelation.  Nat did take iron for a long time because his lead level once measured just a tiny bit higher than acceptable. But this was the traditional, long-approved medical treatment for lead, overseen by his pediatrician. Nat called it “irion,” and he said it smiling, because he could sense my tension around it — my guilt that he had to have it. Vile stuff, mixed into his juice.

Sometimes people still tell me about stuff that makes The Symptoms go away — the most recent thing I heard of was a particular parasite, a good one, that produces something that does something. I’m not being flippant. I am lazy and skeptical and tired. And guilty. I really didn’t try many therapies for Nat because it seemed like what if you did it and did it and did it and nothing happened anyway? You contort yourself for The Diet and then it yields nothing but nebulous, subtle stuff.  You get all the charts set up for your Home ABA and you follow through exactly one day. After that, it’s one big slide back into I can’t take data I’m just trying to live my life.

So what I have always done are bastardized versions of everything. I am the queen of The Half-Assed. I would do ABA only in a natural way like showing him the reward a few times a day so that he would be reminded at times when he was not doing the undesirable thing. In our case the undesirable was destroying stuff or hurting us.  The idea was to catch him at being good, and reward those moments. Do you know how difficult it is to try to find a moment when you’re not pissed off at your difficult child so that you can genuinely compliment him? But it worked — or maybe it didn’t. How the hell do I know why things got better? Maybe he just evolved out of it. For the longest time I credited his meds with damping down some of his excess energy that led to mischief/trouble. More and more I see his meds as part of the problem. I want to wean him off the stuff, but it’s hard to be systematic and harder to be courageous because there’s always the fear that aggression will return.

Those who judge autism parents feel that we should devote our entire lives to figuring things out, like why the aggression occurs — and we should, of course — and not simply medicate, or de-glutenize or ABA-ify. Yes! Of course. But how can anyone know when we can be done trying? Why, for instance, does Nat not use his iPad? Is it because as always Ned and I are not systematic enough, too half-assed about taking it out and showing him stuff? Or is it because we just know that he is not interested in it. That for Nat it is not exactly about inability to communicate; it is more about a lack of desire to. And sure, we can expose him to it constantly, make a true concerted effort, and then maybe eventually he will be so familiar with it that he will use it. So why don’t I do it? Do I have some kind of sick desire to keep him disabled?

Of course not. But do I have some kind of sick desire to have free time and also to let him be? Yes. But if I were not so selfish, would he be like my friend Tammy’s daughter Carly? I don’t think so. I think Carly wanted to talk. I think that Nat either doesn’t or it is just too complicated for him, and he knows that. Sometimes I believe, or feel, that Nat does not always want to be in the down position with people, the one who’s less capable. And talking puts him at a disadvantage. All the nuances, the noise, the expressions, the damn eyes. I feel this. He, like all of us, wants to be great at stuff, even if he doesn’t quite know it, and so I think he just pulls away from talking. I think he likes having his own language that he can control. With his self-talk, he can let me know what he’s thinking about sometimes if he chooses and other times he can guard it, or say, “NOOoo, Mommy will go away” when I try to guess.

So, I don’t know, I kept looking at that red mark on his face and feeling bad. One more thing that I can’t figure out, one more thing he can’t tell me. The caregiver didn’t seem to really know why it was like that. I know she cares, but she didn’t know why it was red. This has happened his whole life; school people telling me they don’t know why this or that happened. “Out of the blue,” was the phrase I hated the most in regard to Nat.  But really, how much effort is anyone, teacher or parent, supposed to put into this?

I had Nat come upstairs after dinner. I told him I’d get a warm washcloth, and he’d sit with that on his face. “Sit on the toilet while I heat it up, Sweetheart,” I said. So, being my literal Nat, he started to unbuckle his pants and to lower himself onto the toilet — just because I had told him to sit on it!! Oh, Nat. We still have so much ground to cover here. “No, Darling, I mean, just close the lid, use it as a chair.” I laughed a little, because you have to take it where you find it.

I know I could have given him the cloth to hold on his face, but I stood there and held it for him. The little bathroom was suddenly a quiet white space.  I looked down at his wild, unbrushed hair, and I simply mothered him.


Love this, Susan. If you’re half-assed, I’m quarter-assed. Maybe 1/8th-assed. I join you in this sick desire to just be, and let my kid be, too–as long as no one and nothing’s getting hurt. We think so much and read so much and do so much in the name of helping our kids, and of course we do it happily and out of love. But no one can sprint all the time; we need a breather, too. I have a friend who does everything, right down to the parasite thing. I used to worry about it but now I just say, “Good for you.” I. just. can’t. Now please excuse me; the boy is beckoning from the other room(“Mommy, mommy, mommy, mommy”) to come watch “Victorious” with him.

— added by Beth Arky on Saturday, March 10, 2012 at 9:02 pm

Preach it. I’m right here with you. I swear you’re thoughts were my own thoughts just days ago.

— added by Jan Bowser on Saturday, March 10, 2012 at 9:19 pm

Nothing half-assed about the loving and mothering, Susan. Nothing at all. We do the best we can and we love them with all our hearts and hope it is enough.

— added by KWombles on Saturday, March 10, 2012 at 9:27 pm

You are an excellent mother. Period. I have not had your challenges. Mothering is always hard. We never feel we have done enough or done everything right. And we are tired and forget that if we don’t do anything for ourselves, we eventually have nothing left to give to them. That you can be there in the thick of it and have some perspective and some sense that you are an important part of the equation is huge. That you can see that life simply is and that resisting it is just going to be one more thing on the long list of things draining your energy is admirable. Letting it go is huge. It’s brave. And it is exactly what he needs. Your acceptance of what is for yourself and for him is beautiful. Go Mom!

— added by Tanya on Saturday, March 10, 2012 at 10:35 pm

We are kind of half-assed too, Brad and I are old hippies, really. I never did the diet with Dylan, because, like Nat, I could tell something was different about him right away, the exaggerated startle reflex, absurdly wide eyes at times, and so much more. So it’s never like something happened and he regressed, it’s just how he always was. I am grateful that I got to communicate with Dr. Wetherby when Dylan was a baby, because she focused on him learning in a natural enviroment and was not an advocate of ABA, I once heard her liken it to breaking a horse, phew, the pressure was off. Somehow Dylan has done pretty well so far between what the public school has had to offer, following Dr. Wetherby’s SCERTS and hanging around with these half assed old hippies!!! We have tackled his issues in a very relaxed and non obsessive way for the most part.
We did get Dylan an i-pad for Christmas, Tara had put some apps on there and he was immediately turned off to it. I knew it seemed too much like work to him, and that if I didnt find something he liked to do on there it would be a huge bust. So I would show him I could search for his favorite baby einstein videos on you tube, and that got his interest. Now he can go on you tube and type in the search for himself, and hes got a few other things on there including a drawing app that he loves. He is on there all the time now, just doing stuff he likes, but Im hoping we can branch out into some more academic apps eventually. I’m just suggesting this because maybe Nat would like to see that he can search out parts of his favorite movies on you tube, if he doesnt already do that.For a kid with significant fine motor delays, I am amazed at how Dylan flies around his i-pad after just a couple months, and it’s really nice how he can bring it anywhere and keep himself occupied.

— added by Eileen from Florida on Sunday, March 11, 2012 at 10:34 am

Susan I love the ending here. Quiet, tender-sweet in a world full of noise. Reminded me of “A Clean, Well-Lighted Place.”

Thank you.

— added by Rosie on Sunday, March 11, 2012 at 11:49 am

There is never a bad time for teaching. I am a crappy therapist and IMO a very good parent. I have one that’s going from non-verbal PDD-NOS at 2.5 to probably a dx of ADHD (grades, speech have all caught up, social skills are coming along nicely) once we see the Child Psych in the next few weeks. Still waiting for an appt date. This things are not quick here. He, we did the diet for…. turned out he was very intolerant of casien.

I have one (10 non-verbal autistic disorder) that today climbed a rock wall. Took 3 tries and a patient helper but he got up about a third of the way on his own. He started piano lesson’s 2mths ago and is doing well. Hates practising but is learning to find the keys for the songs to the logo’s by ear and enjoys his teacher. He photo’d his toys with his DSi underneath the kitchen sink this morning. There’s about 20 frames of the boy doll and mickey talking. Lines beside each of their mouths for speach. Cards with T A D for TAD in their hands – they take turns and while he was running them with the machine he was saying “choose a card” – just like playing “go fish”. One frame is only Mickey’s hand with his chicken’s head in it. How they heck he learned to photoshop on the thing I have no idea. You should see his animated logos (from the tv) with him making the sounds on the DSi. I now have 30 of them saved to a SD card.

Yes, he’ll never live on his own but I’ve never stopped teaching. But, he’s also learned to do. I firmly believe you have to give them the tools to play with… nintendo’s, computer’s, iPad’s… show them the basics on how to use it and walk away. He’s been playing the DS/DSi’s since he was about 5 – Dora was the first game – but it took him a long time to become truly interested in it. The DS he played off and on, the DSi and it’s photos/flipnote studio he’s taken off with and nobody has taught him how to use it.

Pushed… 15min/day/wknd/holiday…. but I’ve raised him “normally”.

That IMO is what parents should do. Parent. Sky’s the limit…. and yes, he’ll never live on his own.

I want one of those cheap computers – Raspberry Pi – can’t wait to see what he’d do with it.

He barely talks. Mostly in 1 to 3 word sentences. I’ve had to prove time and time again to people “never under estimate a Russell”. Given a chance they can do amazing things… they just have to be taught to do for themselves and left to do it.

Therapy…. you can…. but truth is most he’s learned he’s done because he was taught his numbers, how to read and how to “scrub a teletubbie” on the computer.

— added by farmwifetwo on Sunday, March 11, 2012 at 3:43 pm

Count me in with the half-assed attempts! I’ve known so many people who would go to the extremes. And I’ve even tried a few things myself. But at this point, I can’t deal with some of the extras when I”m just trying to get the basics covered each day. My kids know they are loved.

— added by Suzette on Monday, March 12, 2012 at 3:08 pm

Can we start a club for fellow half-assed parents? I would gladly be treasurer or secretary.

I think you have done a beautiful job raising your sons.

— added by Sunday Stilwell on Monday, March 12, 2012 at 4:17 pm

I understand this. You walked your path as best you could and can, LOVING your son. Loving. Love is what matters most. We know that and yet the world will not, cannot, consistently validate that enough nor can the world love our sons enough to come close to how we love them.

— added by Stephanie on Tuesday, March 13, 2012 at 9:49 am

This post touched my soul. The never-ceasing, unrelenting guilt that comes with being moderate in some efforts. It is natural and perhaps healthier to realize that when you are parent and all-encompassing therapist to your child, you can only do so much. That doesn’t lessen the “what if had” guilt. I am thankful you put into words a feeling I am struggling with. Thank you.

— added by Laura on Monday, March 19, 2012 at 4:19 pm

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