Susan's Blog

Saturday, August 31, 2013

No Milestone Unturned

When Nat was a baby, one of his favorite toys was one he got when he turned a year old. It was a “kitchen,” but it really was a small oven-toaster-microwave in one solid chunk of bright-colored plastic. The oven door could open and shut, open and shut, the burner could spin (because after all, don’t we want our burners to spin?) and the toast could be pushed down and then it would pop up–with toast. Boing, boing.Photo on 8-31-13 at 8.01 AM

Oh, how Nat loved to make toast! Was there ever anything more adorable than his blond-ball head hovering right in front of those little smiley-faced pieces of bread? I just now brought the thing up from the basement and Nat followed me, saying, “Nooo, nooo.”He didn’t want me to take it out. Pretty clear message. (I did it anyway because he doesn’t always get his way.)

I’m always saying, “Well, Nat can’t really tell us what he wants.” I’ve been saying this for two decades. I just said it to the doctor two days ago. He can’t always answer accurately. And he most certainly does not just come out with expressive language, “I want…” if he has not been asked.

But he does. He does, he does, he does.

Let me explain. Even though Nat can, indeed, tell us, it is not always accurate. I have written about this scores of times. The piece that stands out the most is my New York Times essay where I bemoaned the fact that I can’t count on anything for Nat because he cannot even make his own bagel for breakfast. I was not complaining about Nat, mind you, I was stating my worry that he would need others to help him so much as an adult, when I’m not around, that kind of thing. The autism parents’ shared nightmare. I did qualify this by later writing about how, yes, he can make himself a bagel — with supervision. He microwaves the frozen thing, then he has to wait for someone to cut it. I get them pre-cut now. He can put it in the toaster oven but ours is so complicated I always stand there and show him, hand-over-hand, exactly how you have to twist the dial past the little toast icons, not right to them, down to the number ’10,’ and then turn it back to the toast icon, the whiter one, because it will burn less.

(Why, Hamilton Beach, why do you suck so much?)

I woke up this morning hearing him pacing, as always. Always, always, always, forever, never, never.  These words are the seeds of despair. Don’t use ’em, folks. Because of what happened next. He came upstairs, threw open my bedroom door. I said, “What is it, Nat?”

“Want to eat cereal.”

“Oh! Great! Okay! Go ahead, Darling!” And I stayed in bed. Me, in my bed, on a Saturday morning.

Then it became even stranger. I got up at last, and as I wandered down the stairs, I smelled a toasty smell. “Nat!” I exclaimed, walking swiftly into the kitchen. “Did you make a bagel?”

“Yes,” he said. I looked at the toaster. It was off, but it was warm. I looked in the trash. Bagel scraps, mostly eaten.  Plate with crumbs. Everything else put away.

There goes all my ass-umptions, up in smoke. Not literally, though. Because my Nat knows what he’s doing.





Thursday, August 29, 2013

College Essays vs. Being a Person

Here is a Tumblr post from Max, who appears to have found his own compass and knows where to go. I am always learning from that boy.


Tuesday, August 27, 2013

Time for Advocacy

Here is a message I’m passing on from the Arc of the US. If you are or have a disabled family member, you are likely going to have to use some of the services provided by our government. We need to protect and improve these services so that they are as efficient and helpful as possible. We want to see our tax dollars put to the best use. Our advocacy and oversight of social service agencies and Congress is the only way to make this happen, regardless of your political affiliations. Take a look at the plea for action/advocacy below.



From the Arc of the US:

Only You Can Cultivate the Next Generation of Congressional Champions for People with Disabilities

Congress is in gridlock.  But sooner or later, this will change.  When the time comes, will we be ready?
Will we have enough Members of Congress who understand the disability community?  Who are committed to defending the programs that people with disabilities need to live in the community?  Who are willing to fight for the rights of people with disabilities?

We have already lost a number of Members of Congress who went to bat for us.   And more have announced their retirements in 2014.

Who will be there to take up the cause?

Despite all of the incredible advances in communications technology, the value of face-to-face relationship building cannot be overstated.   While tweets, blogs postings, and Facebook interactions are helpful, they cannot compete with the value of in-person meetings.  We need to do this the old fashioned way, changing hearts and minds one person at a time.

Take Action!

Reach out before Labor Day Congressional Recess (thru September 6).  Invite your Senators and Representative to come to your chapter and meet with the people we serve.  Have them see first-hand who we are, what we do, and how critical federal programs such as Medicaid, supportive housing, and supported employment are to people with intellectual and developmental disabilities.
Call your Members’ district offices (click here for a link to the phone number).
What to say:
May I please speak to the scheduler?
I would like to invite ________________ to visit my chapter of The Arc.
We serve people with intellectual and developmental disabilities.
We provide ________________________________.
If he/she is not available during the Labor Day recess, then ask about scheduling a visit for the Columbus Day recess (week of October 16). This is an on-going effort. Be sure to thank your Member for the visit and plan to check-in with staff in the coming months.

Information to help guide your meetings

Key message points:
Many people with intellectual and developmental disabilities rely on federal social insurance and safety net programs (such as Medicaid and SSI) and discretionary programs (housing, education, employment, transportation) for their health, safety, and wellbeing.  These essential programs are entirely funded by tax dollars.
People with intellectual and developmental disabilities want to live and work in the community and have access to services and support to make that happen.   Tax and revenue policy should support adequate funding for these vital services and supports.
Further cuts to non-defense discretionary programs and any cuts to Social Security, Medicaid, and Medicare should be avoided by ensuring that the government raises sufficient revenue to support critical programs.

Wednesday, August 14, 2013

Heart Burn

For Nat’s entire life I have worried about the fact that he cannot communicate well enough to tell me he is sick. Many autism parents face this and do not know what to do. These days I guess it is pretty common to take your child to a GI specialist and get a work up, because it does kind of seem like a lot of people in general are having gluten or other intolerances. We all know people with autism who are on some kind of special diet. Whether this is a scientifically proven solution or not to me the important thing is to get your child checked out as you would a non-autistic child. In other words, don’t assume it’s “just a behavior.”

I think, though, that I worry so much that Nat might be sick sometimes that I overlook the possibility that he is indeed (perhaps) stimming. It is so hard to get it right. Just yesterday around 5pm he started burping and burping; swallowing air and making himself burp. We all kept commenting on it, mostly reminding him to say, “excuse me.” At one point Max thought that Nat was just kind of making himself burp in a self-stimulatory way. We were all feeling that way. I don’t know who said it first — it may have been my mom — but it occurred to us that Nat was definitely uncomfortable.

I took him aside, into the kitchen, and I asked him if something hurt. I was anticipating the age-old Nat response, “Yes.” Even when it might not be true. But it might be true this time, and so I felt my heart sinking even while I was trying anyway. “Nat, where does it hurt?”  He thumped his chest high up and said, “Froat.” So then I said, “Your throat?” to which he replied, “Yes.” Then I had to test his accuracy: “Your stomach?” “Yes.”

“Nat,” I said firmly, “Is it your throat or your stomach?”


“Your stomach or your throat?”


Ah! Great! It seemed like it was his throat/chest. “Maybe it’s indigestion,” offered my mom.

Yes! Heartburn always makes you want to burp to get rid of the pressure. Then I remembered that Max recently had had that for weeks and I took him to the doctor and he started taking Alka-Seltzer, then Prilosec or something like that and it went away. Max could tell me exactly how it felt, and when it was getting worse, and then better. Oh, what a relief it is.

But with Nat, it is a delicate operation of asking and re-asking questions; of even thinking up the right questions to begin with. I still wonder if indeed his stomach is involved. It is in the back of my mind to get him a GI workup with Tim Buie at some point soon, anyway. Just to make sure.

So I gave Nat the Prilosec and soon after he did stop burping! So I told him that he had indigestion and asked him to say it: Indigestion. I also told him that if he felt that again he should tell his staff. I named each staff person and kept saying, “Indigestion” and making him repeat it.

Today I was handing him over to John, our dear interim house manager, and I explained to John about the indigestion, and that it might return. I turned to Nat and asked him what it was called, and he said something that was kind of like “indigestion,” but pretty much indecipherable to anyone else. Ned had him say it correctly and then I let him go. I felt a little bit okay, though, because somehow I feel tonight like Nat made a connection, by experiencing the burping, having us take it seriously and figure it out — with him in that question-and-answer way. And then he took the Prilosec and we commented on how it went away. Today he remembered the word, kind of.

Maybe, just maybe he will be able to tell somebody next time, sometime, someday.



Tuesday, August 13, 2013


Here we are at the Cape for the 23d summer as a family. My sons are 23, 21, and 15. And I am wondering for the first time if we are maybe getting too old for this particular vacation. It takes so much energy keeping everyone happy. I know that I should not feel so responsible for everyone’s happiness but I can’t find another way to be. I love them all so much and I want us all to be having fun. But Nat wakes up at 5 or 5:30, and goes to the bathroom four times in a row, and flushes and stomps out of the bathroom each time, doesn’t wash his hands, and shuts (slams) the bedroom door. He does not mean to make so much noise. He just does. But there is Max, on an air mattress in the living room because our rental does not have enough bedrooms. I thought we could cram in this one for a few nights; our usual rental was taken. This one is lovely, enchanting, clean, bright —  but small. Nat’s going home tomorrow and I’m looking forward to that! How shitty that feels, but that’s the feeling. I love him with all my heart and would do anything for him, but he is tough to live with.

So I get up with him and I whisper, “go wash your hands, Darling (I always want to soften any order I give)” and “walk quieter,” and “don’t slam the door,” but I hear Max stirring anyway, and Max stays up so late. Even when he goes to sleep early, it is late. Max says it’s fine, it’s fine. Okay. He’s a nice guy. Max is sunny and cool and breezy and fun and so… I don’t worry as much about his state of mind anymore because I see where he is, how he is. Lives on his own in New York, works, enjoys life. Ben, not so sure. He’s always been prickly. A very deep heart and a mind to match. Ben retreats into warm dark places and creates art and thoughts of brilliant shape and sometimes harrowing meaning. Ben sleeps through all of the early morning noise but the moment he is awake he mutters about Nat’s behavior. Ben’s happiness counts just as much as anyone’s and so I feel what he is saying. I know it is true that Nat should wash, I understand the germ situation Ben is imagining. I struggle between validating Ben and urging him to accept, grow, be compassionate. What I want is even more than that. I want Ben to love Nat.

Last night I realized I was feeling stress and not much else. I was worried about the next morning, not being able to sleep in for fear of noise, for damage control. It’s not damage; I know it could be far worse. I’m talking about tension, delicate sleep, irritating sounds, wobbly balance. It’s just so tiring. So before bed I told them all gently but honestly that I am feeling very stressed out managing Nat for everyone’s sake in the early morning.

Oh, my God, I should not give the impression that Ned does not help. Ned more than helps. Sometimes I think Ned does far more than I do, in physically being with Nat, steering him through the world. He also sits and looks at Max and Ben’s stuff and speaks their language. What do I do in comparison, the scut work, the cooking, cleaning, laundry, worrying. Together, I think, Ned and I manage — there’s that word again — and sometimes we even fly above that level, to enjoyment. Probably a lot, actually, but it is all so hard won.  I suppose everyone feels this way?

It’s just that I want us all to each get our chance in the sun and it feels like it’s up to me to use my five arms to hold us all out there to get at that light. But though they are strong, my arms are tired and there’s only two of them besides.

Sunday, August 4, 2013

Presume competence? Or be parental?

What must it be like to so frequently be told what to do and how to do it? It’s one thing when you’re a child and everyone around you is pretty much older and wiser. But when you’re a 23 year old man? This is one of my biggest areas of concern for Nat, a grown up with intense autism. For him basically to survive, and enjoy life, he needs a lot of supervision, adjusting, and fine-tuning.

If the higher-functioning autistics and Aspies are right, I am to presume competence. I am to treat Nat as if he knows in many ways what is going on, what is being said. I am to act as if he understands me for the most part, but just that something gets lost in the processing or responding on his end. I also have been saying this for a long time. But there’s a part of me that feels a little twinge of doubt, that Kompetence Kool-Aid. I look at how my younger son Ben, who is fifteen, responds to Nat. He still gets frustrated by all the ways in which Nat has to be reminded how to behave. Even as a little boy Ben used to “herd” Nat (eight years older than him) when Nat walked too fast, too far away from the rest of us. Nat still walks too close to strangers on the sidewalk and needs to be pulled back every so often with a sharp, “Nat, slow down.” It is very stressful  going out to eat with Nat and Ben because I know that Nat is going to chew with his mouth open, touch his food with his fingers, and talk constantly, in a regular tone, but to himself. Every so often I will catch Ben’s withering look towards Nat and I will then try to fix everything. I will put my hand softly on Nat’s back to get his attention, and murmur, “try to be calmer, Nat,” or “a little quieter, Darling.” Nat hears me and does it for a little while but eventually slides back to his natural state of being.  And Ben goes back to smouldering. I talk to him about compassion, of course…

Last night, after gently suggesting that he tell Nat himself, Ben said, “I did.” Clearly he was still frustrated and probably had so many other complicated emotions. What must it feel like to Ben, the little brother, to have a relationship with his oldest brother that is virtually impossible to see or feel? What kind of pain remains in his heart, from birth, never healed, to know that there’s a whole person, a whole fifth of his family, that he is never going to be able to talk to, hang out with?  When, how do you accept such a thing? Even I, Nat’s mother, accept this fact in many ways but there are still times when I long to know what he would be like without autism. To have a life with less struggle (in that regard), and the chance not to be constantly titrated, pushed, pulled, or remonstrated by others.

My husband Ned has no problem simply saying, “Nat, come on!” meaning, lower your voice. Ned is his parent, and that is that. This unabashed way of directing him sometimes makes me hurt for Nat, however. Would Ned talk that way to Max, our 21-year-old son? Maybe, if Max were being disrespectful or irritating. But when has that happened last? By 21 or 23 so many young adults have developed subtlety and poise, and their grown-up personae. There is very little room between that adult mask and their child faces.

But as much as I cringe when Ned is so directly parental with Nat — the way I would treat a much much younger child of mine — I also wish for Ned’s confidence that this is just fine. He’s Nat’s father, he will always be. Isn’t a parent always allowed to be parental, i.e., teaching, demonstrating, imbuing wisdom? Is it truly okay to Presume Competence when in fact that person is not competent in some very key, life-or-death ways?

No, not really. Ned is completely within his rights as Nat’s dad to tell him what to do. But my question still remains, how does it feel for grown-up Nat, when the rest of the world does it to him, as well?  For his own protection?

But — here’s the conundrum: if Nat is aware that he is not competent in a particular social setting, and thus does not mind others telling him what to do differently, then isn’t he, in fact competent, at least in a self-knowledge sense?

And so being aware of his difference, his position in society of being constantly correctable — how does that feel for him?  Does it make him sad, or is he used to it? Does he just think to himself, on some level, “yeah, fine, this is me.” Or does he live with an eternal underlying pain that this is how it is and no matter what he does he cannot get people to stop telling him what to do?

Thursday, August 1, 2013

The pocket

Depression is a black and blue mystery to some. To me it is a deep white pocket of emptiness. I slide in, I can’t get out. And then, suddenly I’m out. I don’t know why or when, but it does happen. It’s not because another person has helped me. It’s not because I’ve stopped and counted my blessings. Counting my blessings only makes it worse, because then I know for sure that I am an idiot for being depressed.

Lately, though, I have been learning that I might be able to control the sliding. That there is something that can keep me from slipping downwards. There is something that actually resides in me that can push up from the bottom, against it, and stay right there. This is not what some people might call “Picking yourself up, dusting yourself off,” or “snapping out of it.” Depression is not a moral issue. It is not a weakness of the spirit. It is a tremendous external force that saps your spirit, that makes you believe you are nothing and everything around you is emptiness.

But what I’m finding is, there might be a way that I can sight the white pocket opening up and hold steady… It is about living with the ugliness, knowing that it is just that, just gray feelings, and maybe just exist with those. The gray feelings are the pre-pocket. They feel like boredom and tiredness. They make themselves known to me and then my fear does the rest; it gallops towards the pocket, as if it has to once the grays arrive. It’s as if my mind says, “uh oh, you’re getting depressed, oh shit,” and then it happens.

So the last two times of hovering depression, I have instead thought to myself, “Hmm, maybe it can just be gray. Maybe it doesn’t have to open up to white.” And just the thought kind of makes it happen. But it means I have to dwell in gray for a while, which feels uncertain, ill-defined. Gray feels like a hairy dust ball, it is ugly but it is harmless, relatively. It is just there, uglifying the house. Gray does not mean hopelessness, it means blah, it means un-fun.

The discovery of gray has led me to wonder if perhaps, perversely, there is a safety to the deep white pocket? You just fall in and you’re trapped there until it tilts and spills you out.

So now I’m realizing that there is no Me to the pocket. The pocket is containing me and it just tips me out when it’s ready. But if I allow for gray to swirl around me, as uncomfortable as it is, have I figured out a way to close the pocket?


Mother love, in itself

My relationship with my sons continues to change. While these changes and these three young men delight me, I have to say that the way my life keeps shifting is sometimes hard to bear.

Most of the time when I am with Nat I am aware of how in-himself he is. When I say “in-himself” I am referring to the philosopher Heidegger’s idea of the in-itself and the for-itself of things, animals, and people. We can only be in the state of in-itself when not conscious of our state at all. Which is probably impossible for cognizant beings. The for-itself, on the the other hand, is when we raise a thing or person into the state of awareness, of seeing and being seen.

What would Martin Heidegger think of someone autistic like Nat? Someone who is (maybe) not seeing himself as a person among people? Or to look at it from the flip side, as a person who is all about seeing himself and perhaps only seeing himself?

It probably doesn’t matter. I’m intellectualizing my pain. The pain comes from the eternal state of not-letting-others-in. Nat appears and acts as if he is not letting others in, as if he is not seeing them. I love him and respect him, but I do not like this part of how he acts. I’m angry, too. Why must I always have to look for him, try so hard to understand him, to connect with him? You might rightly say, “Let it go, let him go, he’s a full-grown man.”

Well, I am not interested in that. I will never let him go in some sense. Because I never really had him, not the way I want to. I’m a person who needs, who craves intense connections and it is very hard not getting that from someone I deeply love.

But — isn’t love supposed to be about accepting the package, rather than putting your need and vision onto that person? Yes, indeed, that’s part of love. But then, there’s also dumb mother love, that is just kind of unconscious, in-itself, a big mysterious lump in the universe, that just does and is. We can’t really see it, make sense of it, or even name it, for “dumb mother love” is just the surface.

More intellectualizing. It doesn’t help that Max just left. I’m so happy for him, so proud of him.  We all know that. But what I’m talking about right now is just that immovable object of dense sadness, about him going, always going. The time with Max and Nat forever more will be bound by arrival and departure. Measuring what we do together, how well we connected, was it enough, did I do this or that right?

Maybe when I think like that I’m casting our relationships completely in for-itself mode. I’m making it into a definite shape, a checklist. I’m assessing, analyzing. Intellectualizing my amorphous thing I have with them.

I don’t know what else to do, I can’t turn off my mind or my heart. I can’t stop wanting to be able to mother them again, only this time, to do it right. I also want to do it right now. And by “righ”t I mean just existing, essence next to essence, trusting that love in itself is there, is enough.

Autism & Authors: August 12 on Cape Cod

On August 12 there will be an exciting autism event on Cape Cod, and I will be part of it! The event “Autism & Authors” is a fundraiser for Cape Cod Village, an organization founded by Lauren and Bob Jones, a pair of autism powerhouse parents. Cape Cod Village is their vision for a vital community for adults with autism, one that will support, house, and connect its residents to each other and the community at large. Read here about the organization and the event, and how you can attend and/or help out! Creations like Cape Cod Village are keystones for autism families’ quality of life, because we the parents are the driving forces behind our children’s lives.