Susan's Blog

Sunday, December 19, 2010

There’s More Than One Answer To These Questions

Yesterday I wrote a horribly depressed blog post but if you blinked, you missed it.  I took it down.  I am terrified of showing the ugly despair I feel sometimes.  I think it is human nature to want to hide that from the world, like a cat in a litter box.  I do show more of my honest and grotesque thought processes than many people, and I do that because after a while I can’t keep it shut inside my own skull.  But I need a Medieval barber, someone who can apply a leech or bleed me and let out the toxic spirits.  That’s what this blog is for at times.

The poison comes from self-loathing, or perhaps self-knowledge — meaning that I’ve come to realize that something I do is not the best course of action and yet I do it anyway.  Unstoppable habits:  this is the stuff that nightmares are made of.  We know we shouldn’t — and yet we do it anyway.

I know I should engage Nat.  I know I should organize Nat.  I know I should have more expectations of him when he’s home.  No, no, don’t tell me that he needs his downtime, the dignity of orchestrating his own weekend day.  I know that.  I believe that.  And yet, as his mother, I am supposed to guide him towards self-improvement and growth.  It is my job, just as it is any parent’s job to teach their children the right way of doing things, to show them how to be self-preserving rather self-destructive:  to push them to grow.  The child’s softness and underdeveloped social and mental muscles have to be exercised regularly.  We are the ones who are supposed to oversee that.

But I’ve let things go for too long here.  All three of my sons spin off into their own worlds, deeply invested in their projects, their habits, that for me to step in now would be an enormous effort.  When do you decide that your child is fully formed and not in need of your intervention?

Somehow we can all pretty much say that Max is “done,” and can take care of himself, with minimal oversight.  He’s in a committed relationship, he has a good job, he can prepare meals, and he can be left alone overnight.  Ben, on the other hand, is not yet “done,” because he doesn’t take care of himself as well.  If left to his own devices, he’d stay in front of his art forum and his game design and he’d only eat ice cream when he came up for air. But I figure he will be done pretty soon, once he internalizes constructive habits, once I see him going for an apple on his own, once I see him close the screen and sit down with a book or a pad and pencil.  I already see signs of that, so I’m not afraid for him.  I see that he can arrange his own social life, he can get his schoolwork done, though it takes hours and hours.  I’ve seen him advocate for himself in so many little ways that are actually huge.

So how about Nat?  When will Nat be “done?”  The overall assumption is that he won’t ever be done.  His disability label takes that away from him.  His limitations seal the deal.  I am eternally on the hook for teaching him more and more and more, for overseeing his development.  Parents of people with disabilities understand and feel that hook and that is why there is so much more anxiety in their lives:  the knife of ultimate responsibility sits poised at our throats.

This is the danger of seeing our children as a long checklist.  Having the developmental tasks stretch out before me makes me feel tired and hopeless.  It reduces all that we do to effort and mental calculation.  How many constructive activities did I manage with Nat this weekend?  Okay, well, I brought him to a densely packed Christmas party, where there was even a dog, and he paced from room to room, avoiding the dog and looking for new things to eat.  Occasionally I would grab him and introduce him to someone, or give him a kiss, and try to make him respond to people when they addressed him.  It’s funny how the others would try to get me not to force Nat to do anything, to let him be.  They were anxious about Nat being unhappy.  They felt that he was “doing great.”  I felt that there was so much more he could be doing.  I’m supposed to think that way, to always have expectations of him.  But those around me were trying to get me to see that what he was doing was actually very good; he was there, he was happy.

So which is it?  Am I to put more demands on him, to try to bring him more “up to speed?”  Am I still working under the model that I have to push him Closer to Normal?  Or is the goal Closer to Fine?


Motherhood is the HARDEST thing that I have ever done. Ever.

All I can say is: wonderful post, Susan. I hear you.

— added by Susan on Sunday, December 19, 2010 at 8:53 am


Both our boys are 21 and at similar levels; Bobby has an accompanying intellectual disability and will need to live at home or in a group home (for now and forecast out, for the longterm, that’s home). I understand where you are coming from quite well.

For us, there is no closer to normal. We work at mastering new skills; he’s working with me on how to cook because he loves the idea of being a chef. We work at keeping him connected to us by insisting a portion of every evening be spent as a family, but we respect his limits, his needs for aloneness, as we all deal with differing levels for the need for solitude.

Questioning how much to push, how often, how hard to work, how much to regulate, these are things as long as we are our children’s guardians (as Rick and I will always be) will have to face on a daily basis. As his legal guardian, my job is different than as parent (or perhaps easy to separate?): what is best for him? What best serves his needs for autonomy? I try to work from that perspective. How much autonomy would he have in a group home; how much would he have to conform? I try to make a balance.

Interesting the idea of done. I don’t think you’re ever done as a parent, not even if they grow up, graduate, leave home, marry, work. I think that the heartache my mother feels over my brothers (who did all that, only to come back home, all undone, lives in disarray due to mental illness or physical illness), the same kinds of questions you ask yourself, I ask myself, she too asks herself: how hard to push, how much to push, how long will her job of helping, teaching, pushing go on, will she ever be done?


— added by KWombles on Sunday, December 19, 2010 at 8:58 am

I am right there with you, askign the same question!

— added by Penny on Sunday, December 19, 2010 at 9:30 am

The other day I asked a question to my friends “typical” child, Emily. Emily completely ignored me. The tension was palpable. She just refused to speak to me. Yet when my son Riley ignores people, they are more comfortable being ignored than having me force Riley to respond. They say he is doing “great”. But for them, great amounts to him not acting out or being disruptive. That isn’t great to me. Although I am forcing him to respond, I’m also teaching him how to behave in a social situation. Would I like to let him just sit in his own world and stim? It certainly would be easier. It often feels that instead of just enjoying Riley, I turn every situation into a learning opportunity. It can be exhausting. It’s that exhaustion that allows the “dark” into my thoughts, seeping in until I have a full blown pity party. It is in those moments that I Thank God for chocolate and red wine…

— added by Terri Packard on Sunday, December 19, 2010 at 9:35 am

Well, like Ben if left to my own devices I’d survive on pizza, eggs and salad… a little icecream for dessert sounds good 🙂

I get frustrated when people try to force the younger to engage in conversation – my elder never, ever, ever, ever.. shuts up.. it’s truly annoying. He can answer “yes/no” with relative ease so I tend to repeat the question asked into the format. Luckily here everyone knows and they will say “hi”, some will ask him how he is, others push a little more conversation but don’t get frustrated at the lack of replies. One of the pro’s to village living.

If the younger is obviously bored, or upset, or wants to be engaged and is having difficulty – I’ll push. Otherwise, I ask. “Do you want to read a story” and if the answer is “no”…. then I respect that. If we have homework to do and the answer is “no”… like all other children… he has to give it a try first.

ABA told me he could never entertain himself, he had to always be busy. That always bothered me. He’s a child, not a robot. He’s learned to play – he misses little and has learned to mimick others and things he’s seen on tv etc. It may not be “right” but I’m good with that… I’m not the one “playing”, his game, his toys, his rules.

— added by farmwifetwo on Sunday, December 19, 2010 at 11:31 am

I wish I lived in that village. Your head is so firmly screwed onto your shoulders!! 🙂

— added by Susan Senator on Sunday, December 19, 2010 at 11:35 am

Thank you, Kim.

— added by Susan Senator on Sunday, December 19, 2010 at 11:36 am

I think we all have days when we worry that every moment we spend with our kids should be a teaching moment. It’s exhausting and overwhelming and I can never do enough. I also have days when I can just let my son be, and trust that the most important thing I can do for him is love him, and the rest is mostly genetics and luck. I don’t have a lot of control over which days are which, but I do know that he and I are both happier on the days when I’m able to let it go.

It’s a lot easier to write about letting go than to do it. If we accept that we don’t have much influence over how our kids “turn out,” we call into question the value of anything we do as parents. But I think that’s something worth questioning. It’s impossible to live day by day under that crushing burden of responsibility and guilt.

— added by Sarah on Sunday, December 19, 2010 at 11:45 am

I wrestle with these thoughts in my head all the time. Thank you for writing them down so I don’t feel so alone in my thinking. I love your writing and your honesty.

— added by Victoria on Sunday, December 19, 2010 at 12:12 pm

Boy, do I hear that Susan. I was thinking very similar thoughts last week. My sense was that I need to find a balance between letting him have down time (and letting myself off the hook)and getting him to do something constructive instead of deteriorating into perseveration (which requires motivating myself). I think the key, now that our boys are young men, is to come at it from the perspective that we are not trying to “improve” them so much as to protect them from following their own temptation to slide into self-destructive behaviors. I think about the movie “The Aviator”: Howard Hughes had enough money that he was able to indulge all of his obsessive-compulsive behaviors — and look at what it turned him into in the end.

— added by Cathy Boyle on Sunday, December 19, 2010 at 1:16 pm

Jeremy will be 20 in February, Rachel 22.
Susan (Schwarz) and I have been on this journey a long time, like you.

One of the most valuable things we learned along the way was how to deconstruct those “should-be” feelings.

How to recognize when their origin is external: peer pressure from other young people (or from their parents!), keeping-up-with-the-Joneses-whose-kid-has-been-immersed-in-all-the-cutting-edge-interventions, social disapproval from people who don’t know beans about autism, you name it.

And — most importantly — when to tell the rest of the world that it needs to Sit Down and Shut The Fuck Up, and how to put its “should-be”-generative behavior on extinction. (See? Even an “evil neurodiverse” parent like me can learn how to make good use of ABA methodology! :-))

We push Jeremy to expand the envelope of his comfort zone, a little bit at a time — at his own pace.

We do the same thing with Rachel (who doesn’t have a formal diagnosis, but has executive function issues of her own), on different issues. Again, at her own pace.

It’s all about *personal* goals for each of them, and what *they* consider (within reason) to be improvements to their quality of life, not necessarily about what *other people* think constitutes quality of life.

Doing it this way does require helping them to develop the insight necessary to identify and embrace good long-term goals. That’s a process of refinement that goes on continually. (But then, Susie and I go through that same process ourselves, with our own insight into our own goals. Different levels of refinement, but essentially the same process.)

We have learned not to think in terms of “done”. We ourselves are not “done”, and we won’t be, as long as we live and breathe. Far enough along to succeed with the available supports? That’s a different question, and a constantly moving target. For each of us. Not just Jeremy and Rachel, but our parents, as they age, and we ourselves, looking ahead, as we age.

The key to not despairing is to focus on one step at a time.

And Normal? Fuhgeddaboudit. It’s a town in downstate Illinois, best viewed through a rear-view mirror.

— added by Phil Schwarz on Sunday, December 19, 2010 at 4:01 pm

Oh, I feel the cold blade of that knife all the time, even though my son is only seven. I feel constantly torn between grabbing every moment to cement a skill, and just letting him “be”. I try so hard to remember that his idea of happy might not be mine, and that this, coupled with his gaining as much independence as possible, should be my ultimate goal. Beautifully put Susan!

— added by kim mccafferty on Monday, December 20, 2010 at 11:08 am

Susan, we all have those burnt out days. That’s okay, and you shouldn’t feel guilty. If we’re constantly bombarding our kids with things they have to learn, they will eventually tune us out. We all need to have down time and even though my own blog focuses on learning from small moments, I still believe that the most important thing our kids can learn in life is how to be happy. That should be the goal for all of us … to find happiness in our lives no matter how many obstacles we have to overcome.

This of course is easier said than done, but think of the positives you have accomplished, and stop worrying about what is not accomplished yet. We all have to take it one day at a time … one step at a time. I know you are worried because Nat is getting older and he is entering adulthood, but learning does continue, even as he enters adulthood and for all our kids, success will be relative to the individual. My oldest daughter is 32 and lives in a group home. She is severely disabled but she is well cared for and happy. She is non-verbal and she is unable to manage on her own. For her, success is being in her group home, participating in her day habilitation program and having her music to listen to. She takes trips out in the community with her peers and is happy to be one in the group.

For my youngest daughter, Marisa, who is on the autism spectrum, success will be quite different. She is higher functioning. Marisa’s goals are to have a job and live independently with a support system in place. We are in the process of working on helping her achieve these goals.
The point is that each child is different and therefore the expectations and goals should be different for each individual. I have two neuro-typical daughters who do not have disabilities and for them, levels of success will vary and be harder in some respects than for my other 2 daughters. In life there will always be challenges and hurdles to overcome even when we think our kids are completely grown and out on their own. It really doesn’t ever end. So relax, take a deep breath and start anew! Accept the fact that you may have some burnout days and that’s okay. There’s always tomorrow to work toward that next goal. What is normal after all? Who decides what normal is? It doesn’t have to be the ultimate goal.

— added by Sherry Rubin on Monday, December 20, 2010 at 11:27 am

Susan, I have no answers for you but I have the same questions, many ,many of the same questions as you do. Coming to this blog makes me feel sane. So often when I finish reading your blogs I’m thinking -me too! I wonder that too! I feel that way too! Thanks for letting me know I’m not the only one.

— added by Diana on Monday, December 20, 2010 at 8:37 pm

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