A lot happened for me 2005-2006. I started this blog, and began to hear from other people who understood. Some bad stuff happened too, things I can barely talk about or think about — probably the worst things so far in my life, worse than Diagnosis Day. But unlike that, these things appeared to be beautiful at first. But you know how it is, as long as you survived, it’s okay. Or at least, it’s over.
[Deep breath. Okay. Look at the sun, pull yourself back to the Good.] Perhaps the best thing that happened during that time was that I found yet a different form of self-expression. I started bellydancing, and riding a mountain bike. I’ve talked and written a lot about the two, but maybe not so much together. Only recently, when I started writing in different places than right here, did it occur to me that the two activities — dance and cycling — are opposite ends on my spectrum. And when the two coincide, I’m the rainbow in between. My dance name is Lilia, SusanLilia, and my bike is named Scarlett. Today I realized that I am Lilia, and I am Scarlett. I am a real bellydancer. I’ve known that for a while, though it took some time to admit it, because there is so much cultural baggage around bellydancing. Some people just don’t get it — the total immersion in the caramel-like music, the mastery of muscular isolations, the joy in seeing your body swathed in gem colors and sparkly beads. My body, though it is 50 years old and not at all perfect, becomes beautiful to me in those moments. I am at last the way I’d always wanted to be.
It is also true for my extreme opposite passion: I see that my bike is me. When I think to myself, “I just love my bike,” I am really saying, “I love myself.”
I guess sometimes I do. I think what happens is that I often start out my ride hating myself, or my life, things like that, but somewhere on the road I shift — literally and figuratively — into a new gear and though that gear is harder and higher, it is a deeper and more powerful ride. I thrill to the fact that I ride a big mountain bike which is a hard ride because you cannot go light like a road bike. And my joy derives from that fact, that I have to work hard to get speed, that I have to put all my bodypower into it to get my smooth cadence.
I wish there were better words for joy. But that’s it, aside from ecstasy, but that has the sexual edge to it, which biking does not. Joy is fresh, springlike air. Ecstasy is summer heat. Bellydance is thought to be sexual, but it’s not that for me. It is sensual, it is about happiness of the body, but not about orgasm or desire. Maybe for others it is, but I dance alone — with a mirror. My dancing, in full costume, is utterly for me. My audience is in my head.
And biking is also about being in my head, in a way that can only happen for me when I am alone and diving into the road or trail ahead. I become all about holding on and letting go. Planning and just going. It is a crazy mixture, and that is another reason I love it: it’s the coming together of extreme opposites, the point where they are one. I meld with the activity, until I am simply It, unaware of Me.
But it is me, I’m mastering this thing outside and inside of me, and that is happiness. All because I dared to come out at 42. I think maybe we should all become debutantes to our own lives.
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.
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.
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.
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.
**** to my readers: PLEASE DO NOT SEND ME NEGATIVE COMMENTS TO THIS POST. I DO NOT BELIEVE THEY ARE HELPFUL. I HAVE A PROGRESSIVE POINT OF VIEW AND THAT IS WHAT I POST HERE WHEN WRITING ABOUT POLITICS. I WILL NEVER POST NEGATIVE STUFF, NOR AD HOMINEM ATTACKS. PLEASE KNOW THAT I AM TRYING TO REACH OUT TO ALL OF YOU HERE AND NEGATIVE STUFF WON’T HELP ANYONE. THANKS!!!****
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.
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.
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.
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.
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?
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?
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.
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.
There is a bipartisan website starting up (thanks to Reps Max Baucus and Dave Camp) that is seeking imput about tax reform, cuts, and spending. Go to the site and tell your story, make suggestions! Go to https://taxreform.gov/
Here is what I wrote. Feel free to plagiarize and pilfer, adding your own details. Just cut and paste my letter with your own situation and names!!
People like my son Nathaniel, who is 23 and has autism and intellectual and developmental disabilities want to live and work in the community and have access to services and support to make that happen. Nat, whose autism is severe enough to give him a Priority One in our state’s Department of Developmental Services, actually works 3 days a week with supports. He pays taxes. He actually is beginning to earn enough to pay for part of his own transportation and job coach! (Using the IRWE program of Social Security, Impairment Related Work Expense). This is beyond my wildest dreams for him. He is on his way to independence *because* of government dollars. I am forever grateful to this country for such programs as Medicaid and SSI.
Tax and revenue policy should support adequate funding for these vital services and supports so that more people can move to greater independence.
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.
Please reject policies that help only the most wealthy; and raise revenues in a progressive way without increasing poverty or income inequality.
There are reforms to the tax code that could be made without hurting people with intellectual and developmental disabilities. Medicaid can be modernized so that those dollars can be used towards community college programs that train people like my son how to work and live more independently, rather than languishing in Day Habilitations. Medicaid regulations need to be more flexible so that people with intellectual disabilities and autism can use Medicaid-funded programs that work towards getting them OUT of the government systems!!
Thank you for all you do for people like my son. –Susan Senator
I’ve been doing my Swami gig live these days and recently sat down with a woman I’ve known forever (forever in autism years means since diagnosis). She is stuck between a rock and a hard place. Her son is currently home and should be (would like to be) living elsewhere. He is a Priority One, like Nat, and so his situation is difficult. His mom took him out because the placement was inappropriate. The match was terrible. The needs of the young men were completely different. I’m pretty sure that this was a vacant slot offered by the Department of Developmental Services and they found their round peg to go into that square hole and just hoped for the best.
There are so many parents like her, like us, coming up through the schools, who have learned how to fight, just as the parents fought before the Federal law, IDEA was passed. Parents have always had to fight for their disabled kids. It’s a sad fact, but it does make a creepy kind of sense. The state bureaucracy figures that if your need is bad enough, you will fight for it. Even if this is true for some, it is not true for others. Some have such a need for supports that they are too overwhelmed — because of their child’s needs. Some work long hours. Some don’t speak the language. Some don’t know what to do, what is even wrong, who to call.
How can this problem be solved? I don’t know. The piece I do know is the advocacy piece. No one is going to give anything away unless they are a charitable foundation and I’m pretty sure that the state government is not. And the line that we are given — that the system is abused by so many — I just refuse to believe it. My guess is that many more people don’t know how to work the system than do. Even the most highly educated, well-resourced parents I meet as the Swami do not know what they should do when to prepare their autistic child for adulthood.
Here are my rules of thumb:
1) Assume that no one knows you or cares about your kid. Get angry. Then get over it.
2) When you have a good hour, call your state Department of Developmental Services, or Department of Rehabilitation Services. One of the Human Service agencies in your state government. Stay on that phone. Get names of those you are talking to.
3) Learn the name, number, and email of your own liaison as well as your regional director.
4) Send an introductory email to the liaison and cc the regional director. Tell them you will follow up in one week.
5) Rinse and repeat.
You’ve got to call. That is the first and foremost task on your plate. Make your contact, and show them who you are. Think like a Who. We are here, we are here, we are HERE!
Around 14 years ago we were invited to a holiday dinner with the family of one of Max’s friends. I think I had just had Benj, because I had that new baby feeling of not quite remembering everything else I was supposed to remember. This was a gathering of several families; I remember that the hosts had a very long table. The dining room and all the front rooms had large Victorian-style low windows that faced the sunny street. The kitchen was right off the dining room and had a door to the back yard, which wasn’t a yard at all because this was a first floor apartment in a row of attached brick buildings. The apartment building was on a side street to a busier street.
We were about to sit down at the table when in through the dining room window climbed Nat. I looked up at him and felt like I’d swallowed a wet frog. My gut knew before my brain what had happened. Somehow Nat had escaped from the apartment and we had not even realized it. My guess was that he’d gone through that kitchen back door, because we would have seen him if he’d gone out the front. Do I remember faintly, darkly, a back door slamming, or is that my mind filling in an old obscure memory?
Everyone must have noticed, but I don’t remember us all talking about it then. I think we even stayed for the dinner, rather than going home and sitting around in shock. What I do remember is that awful feeling of being in two places at once: the Me at the dinner party, trying to participate, smile, and be a good guest; and the Me stuck in the previous hour, tasting the terrible thoughts, “what if…?” Ned and I tried piecing it together later on. Nat must have opened the back door of the kitchen and perhaps it closed on him and locked him out. Even back then he was not an “eloper.” (I don’t like to use the term “elope” because that has the exciting, romantic connotation of people running away together to get married. No, there is nothing exciting or romantic about the autistic children who disappear from their homes, attracted to a nearby body of water or some other fixation.) This was one terrible trait common in autism that we did not have to contend with. Except that night. Still I think of it as innocent, unintentional. As if all those other autistic children who run away mean to do it. As if they are not victims of impulse and circumstance, too?
We imagined that Nat, being presented with the locked door, had made his way through the backyard, and all the way around the backs of all those connected buildings, until he found himself on the street. He may have even gone the opposite direction and wandered onto the busier street. Yet he made his way back to the front of the apartment, and found the way in through the window. I don’t know what was in his mind, whether he panicked or simply made his way back to us, or both. He was not upset when he climbed back into that dining room. He was about 10, and this was his most impulsive age so far. To this day we both marvel and shudder at this memory, because of what did happen and because of what could have happened.
The families of Mikeala Lynch and Owen Black were not lucky. Their children wandered and died because of it. There is so little we know about why these children run away . I have no words of wisdom here; I guess we are still in the phase of trying to raise awareness via Sunday Stillwell’s blog, in the hope that someday soon there will be an answer, a way to protect our children from fatal impulses. Today we can only grieve.
I still think about It sometimes. My brain cells loop alot, rather than moving forward and outward. But I wonder if I get this out on “paper” if it will make the shitty thought go away.
The other day I was speeding down a hill on my bike — which is when I think of everything and nothing — and I realized that I’ve rarely written about a the question I first asked Dr. E, the developmental pediatrician who first evaluated Nat, 21 years ago. He delivered the diagnosis, “PDD, under the Autism Umbrella,” (almost charming, calling it the Autism Umbrella, as if it can shade you or keep you dry from unpleasant things). I was not stunned. I remember feeling as if I were in a movie or something — at a distance. I experienced the news in levels of my consciousness. The rational, intellectual part of me said, “Yes, yes, of course. That makes sense.” The fearful animal side of me thought, “What? What do I do? What should I do?” And the mother’s heart of me asked, “What did I do?”
I asked the doctor if I had caused Nat’s autism (I have written about this) because I literally did not know what caused autism. But he told me at least what did not cause autism: a cold mother. He said it resided in Nat’s neurology. Later I learned that his brain cells — Pukinje cells? — were growing in clumps and not tributaries. Back then I thought, “Can I please just cut some of those cells out of my head– surely I don’t need to be this non-autistic, I could handle it — and graft them into Nat’s?
But deeper and more mired in shit was the thought: What caused this?
1) Was it because we chipped away at lead paint in our dining room while I was pregnant with him?
2) Was it because our car back then had a rotten egg smell of exhaust? Was there something toxic I was exposing Fetal Nat to?
3) It was a shitty labor and delivery, from the first. A ton of Pitocin. They go back and forth about that one. Or how about the fact that the epidural was too strong and I could not feel how hard to push? I was pushing him out for three fucking hours? This is the one that reduces me to animal anger, because this one is not my fault. That fucking doctor knew the baby was in distress. He took blood out of the emerging Nat head and could not even wait for the elevator to run to have it looked at. And for what? What was he looking for? Low oxygen? Why even wait? Do a Goddam caesarean, Asshole!!!!
4) Was it because I was depressed in his earliest days? Did I withhold love because he seemed so fragile, I didn’t want to lose him? Every time I looked at him my heart twinged, pinched. No, this one counts as Refrigerator Mother which we know is wrong.
5) Was it the shots? No, that has been disproven, but sometimes I fear it anyway. It makes a horrible kind of sense. But no, it has been disproven.
6) A top-rated Boston hospital specialist told me that Ned and I are genetic land mines for autism because on my side is all the depression, OCD, and anxiety. On Ned’s side are the geeks and nerds. So actually, I should not give Nat some of my brain cells, he’s probably happier with his own.
Ned says, “You will never know the answer. So you should not think about it.
But sometimes I do, because I want to know who to be angry at.
I’ve been spending a lot of time with Nat — not unusual — and everything’s been going pretty well. But there are a lot of moments where I have to sigh and remind myself “this is the disability.” Meaning, he is limited by his autism in certain ways. Meaning he can’t do what I want him to do. But I don’t know if he feels his limitations. If my expectations are too high, is that his fault?
I’m thinking back to our lunch the other day, in a nice restaurant. Apart from our deciding what to eat, we did not really talk to each other. Sure, I told him to put his napkin on his lap and to take my french fries, but there was no conversation. I have to be quiet when I’m with him, and I don’t enjoy that. But again, shouldn’t I tell myself that is how he is, rather than think how sad it is that he is disabled and can’t talk much. When will I be able to make the final jump into seeing him as whole and unbroken?
If that is true, however, then why do we call it a disability, a disorder? How do we define it? Perhaps instead of the connotation of disability being about limitations and something being wrong with you, it should be more about what is really hard for you to do? Maybe disability is about an extreme difficulty with doing certain things that the majority (the non-disabled) take for granted? So I don’t mean my difficulty running three miles because my hip joints are screwed up. I don’t have a disability in the hips. But further along the line of inability to run three miles, one would meet a mobile disability. Where is that dividing line?
Also, I wonder about disease vs. disability. Once in a while people refer to autism as a disease. I bristle at that. But then how do the people with cancer feel when others say, “thank God it’s not cancer.”
If some parents feel like, “Oh, shit, it’s autism,” is that understandable, or a put-down? Many of the high-functioning autistics and Aspies I know are horribly offended by the “Autism sucks” mentality. That’s because they either don’t see autism as a disability but just a difference, even a positive difference; or it’s because they see autism as a disability and they’ve accepted the fact that there are things they cannot do or understand. They don’t feel sad about it, they don’t feel broken or less-than.
I guess it depends on whether you see disability as a negative or as just another aspect of you. I think we probably have to make room for both — and there are probably even more viewpoints — but then we have to expect friction and factions within the community.
To me, most of the time, it’s not really important anymore what autism is (good or bad or just something). It’s what happens when autism meets the world. Nat being with me can be experienced happy or sad, depending on the circumstances. With his pediatrician, I am over-the-top proud of how much he can do, how much he’s grown. With his new adult primary care physician, I felt awkward about how much he could not do, and wondered how the heck such appointments can happen when the caregiver cannot translate or be a proper liaison? Or, when I was in the restaurant with Nat, I thought of asking if he needed the men’s room. But I saw that it was one of those with stalls, urinals, etc., and of course the bigger stall for “the disabled.” But what there also needs to be is the single room bathroom, for those who do not understand the subtle bathroom behaviors. For the times when you have a caregiver of one gender and a client of the other.
The world needs to be told again and again what reality is for some. How a little change can make all the difference between able and not able. I guess that’s why my definition of disability shifts: it depends on the circumstances. If the rest of the world accommodates without judgement, without eye-rolling, and without having to go to the Supreme Court, then maybe we’d make some headway in viewing disability as a difference, the way the Self-Accepting Autistics and Aspies do.
I took Nat to an adult primary care physician today — my own — for his annual checkup. We have loved our pediatrician for almost 20 years. She grew up with us. I learned from her all about childcare and she learned from me about autism care.
I thought that because Nat is now 23, he should be going to a doctor for adults. My doctor is a lovely man whom Ned and I both see and have for years, and I knew he’d be deft at handling an appointment with Nat. Now I know that using the words “deft” and “handling” implies that Nat is difficult at the doctor’s. No, far from it. He is a very compliant patient. The problem is that he is too compliant. He always answers “yes.”
It was quite an awkward problem, explaining to the doctor right in front of Nat that sometimes Nat does not answer accurately. What I said was, “Nat, you sometimes have a hard time answering some questions,” to which he replied — of course — “yes.” But that interaction alone told my doctor a lot. God bless the man, I watched him look at Nat with each question, then subtly slide his eyes to me, and record my answer. His eyes were inquisitive, not at all frustrated or impatient. No judgements.
Why should I expect frustration or impatience or judgements with a medical professional? With anyone for that matter? Because I have lived on the planet for 50 years and I know that the speed of people and communication is so fast. There are so many things that need to get done in this world, that even the kindest of us sometimes must bulldoze the slower and struggling. Today, this did not happen, because my doctor is very respectful and because well, we were paying for his time, after all.
I realized, as I watched the doctor examine Nat, and figure out about him, that it is an incredibly hard thing to receive good medical care if you have a communication and cognitive deficit. You depend on the others to decipher, describe, and decode. The human body can reveal some of its mysteries, but certainly not all. You can’t shine a little penlight into the brain to check for bad headaches. You can’t see cancer in a stomach without a huge intrusive test. You can’t detect pain in someone else’s joints. No one does MRIs at a routine check-up, but sometimes I wonder how can we not with guys like Nat? What I’m saying is not new to many autism parents, and autistics themselves, I would bet. The fact that we cannot know for certain how our developmentally delayed loved one is feeling is nothing short of torture. And what is it like for Nat himself?
I had prepared Nat in the usual way for this exam: “This will be a new doctor. But he will examine you just like Dr. R does. Listen to your heart. Take your blood pressure. Weigh you on the scale…” And smiley Nat was just as smiley as 18-month-old Nat was getting his MMR vaccine in 1991. I remember how the doctor said, “Oh, you’re still smiling at me!” after the shot was over. (Sometimes, even though that infamous vaccine has been exonerated, this story still makes me a little sad. I will leave it to everyone else to interpret that.) Dr. L seemed particularly relieved to finally move to the plain old examining part of the appointment, rather than the Q and A about Nat’s health in general. But even here, Nat did not understand what was wanted of him. “Deep breaths,” the doctor said. “ho ho ho,” Nat kept saying. Perhaps that was what they do in yoga with him? Does he even take yoga? “Swallow,” the doctor said. Nat just kept mushing around his mouth. “Look straight ahead,” the doctor said. Nat would look very earnestly right at the doctor. D’oh!
Nat usually does better than this at exams but I realize that he was probably thrown off by the newness of the experience: this doctor, this office, etc. I felt a little sad about just how much comprehension was missing on both sides — Nat and the doctor’s. Because Dr. R, the pediatrician, has seen Nat grow up and improve in so many ways, somehow the exam always feels like a triumph, a cause for celebration. At the end of this one, I wanted to lie down. Not because anyone had failed, but because communication is just so tough for Nat, and yet so important.
But I am certain that this was a success, nevertheless. When I asked Dr. L if I could also bring Max into his (already full) practice, he said, without hesitation,”Oh, sure.” I assured him that Max was “easier,” and then felt very ashamed of myself for that. But what I meant was, no forms for Max, and pretty forthright conversation. No judgement. He then sat down with the 10-page sheath of forms the DDS requires him to fill out for Nat, and very graciously joked that we must be so bored waiting for him to sign all these. No, boredom was not what I was feeling.
My column for the “Cognoscenti” blog on WBUR (Boston’s NPR affiliate) is about mental illness, social stigma, and evil.
I am in love with Nat’s Day Program provider, ASA (Autism Services Association). I went to their 50 year celebration today, and I was surrounded by ASA clients and staff. I also was sitting next to my old friend Margaret Bauman, who was one of the speakers (along with ASA Founding Parent Barbara Cutler and Martha Zeigler, two other Autism/Intellectual Disability Community Glitterati).
When I walked into the chaotic, bright room, my eyes connected with Nat’s immediately. How does that happen? It’s like our bodies know the other is in the room before our minds! I sat down next to his lovely and lively job coach, Michele. She told me how great a worker Nat is. Then Chuckie joined us, another ASA client. Chuckie talked to me nonstop; I had to tell him a few times that we should listen to the speaker, but finally I gave up and just chatted with him. Mostly he told me about all the things he was proud of (his new cap, his work award, his name being called, and his sister). Sometimes Jimmy from the next table tried to poke Chuckie, but we were all able to handle it. Chuckie was pretty good at self-advocacy. He would tell Jimmy to stop. He would tell me what was going on. And then he would call over any of the very animated staff who would help out. I like the way the staff people interact with the clients: sort of a mixture of camp counselor, friend, and authority figure. I think it was perfect: dignified yet also at a simple and straightforward level that the clients, mostly autistic, intellectually or developmentally delayed, could understand. This crowd of people was pretty intensely disabled. A lot of rocking, shouting, humming, and a good deal of the language around me was labored. I really could understand most of what was going on, because the clients (like Chuckie and Jimmy) were so welcoming of me, and not at all annoyed that I had to keep asking them to repeat themselves. Usually, I find that if I just relax and settle in with the person, catch his eyes, maybe read lips, I can get what’s going on. It’s really not rocket science.
Nat sat very quietly. Dr. Bauman said again and again how she could not get over how independent and composed he was. And handsome! (Nat does not have to work hard at handsome at all. That’s one thing that comes easily to him –that, and charm. I am not at all biased, even though I am his mother…) I’m not sure what he could hear or get out of today’s program, but I know he loved having his name called, and collecting his award as an excellent and committed employee. He came back to his seat with the certificate and a chocolate bar, and he looked at me for permission to eat it. In that sense, I am still his go-to person for learning the ropes. Although I want him to continue to connect and bond with others out in the world, I am so pleased that I’m his Mommy, The Great and Powerful.
I had a chance to catch up with Dr. Bauman and I asked her if she thought that the next generation of people on the spectrum were going to be different from Nat’s fellow ASA clients. She said, “I think what is here today is really different from when I was a resident. Back then, so many of these guys would not even be called autistic; they were ‘mentally retarded,’ or had ‘childhood schizophrenia,’ or whatever they were calling it at the time.” She felt that they had come such a long way from that era, because of public education and early childhood services. Then of course I had to put in a plug for the late developers in the autism population: “And you know, some of these guys bloom later in life, and then they have no school to attend. Nat really blossomed after 17.” And of course she did know that. She said, [I'm paraphrasing] “Not that they’re necessarily ever going to cure this, but there are going to be more and more types found, and we will also then know how to treat each type.”
With the current autism paradigm, you get the feeling of being in a simmering stew. There are all these rich ingredients floating around –research, studies, theories, homespun wisdom — and each thing is infusing everything else in there. The surface is bubbling, but it is just not ready. But soon, soon. We will have our answers as to best practices and we will have our programs that are worthy. We will then be able to do even better by these people. For as great, humane, and creative as ASA is — and it is, I say that a year and a half later – there is always more that can happen. Specialized community college programs, for starters. Greater independent living training. A better awareness of resources and funding streams out there, so people can maximize what the system has to offer. Someday we will feast, but for now, all we can do is stir the pot.
So Nat was hurt yesterday by one of his roommates. The roommate had had a meltdown and punched Nat in the chest and also hit the staff person and the other roommate. I was upset about this, especially after hearing that they had to turn around and go home right away. This means they did not get to go to their new friends’ group home.
I gnashed my teeth and felt my anger bouncing around inside my belly, aiming to get out. But I knew I had to control it. My mantra in the end is, “They are Priority One for a reason.” Meaning, the Department of Developmental Services only grants Priority One status and funding to people who are considered very involved with their disability. Nat is pretty wrapped up into his autism. His roommate is, too.
But it does make me feel the limitations of this living situation. When I heard about this I wanted to yank him out, just like in the school days. I am always quick to react and act; I’m only now learning that I don’t have to act right away about things that upset me. So what I did was to call Nat and get a sense of how he was doing. He was okay-ish. His voice was higher-pitched than usual and kind of full. But sometimes he sounds like that when he is laughing. So who knows? Goddammit I wish there were more clarity with this disability. It is the one thing that torments me, the not knowing how he is feeling. The way I have to guess, intuit. Yes, sure, I do a good job tuning into Nat, but I really truly wish I could be certain sometimes.
Luckily, Nat has some excellent staff at his house. John especially. John wrote me that he sat with Nat for most of the evening to guage how he was feeling. He is also very tuned into Nat. He calls Nat his “little brother” even though Nat is probably only a year younger than him. I hear a lot about how we should not infantilize our guys but this is not that. This is an expression of John’s fondness for Nat, and how much he identifies with him. How protective he feels of him. How like family, too.
Nat and the roommates are so well cared for that in the end we do not have to get really worried and upset over the day-to-day problems. Nevertheless, I called and spoke to Nat myself. I reassured him that his roommate was sorry about the punch, and that he would not do it again. How do I know that? I don’t, but I hope. Nat kept saying, “yes,” to everything. Eventually I said, “Do you want me to come over there to be with you?” And he said, “No.” I asked again, reframing it differently in order to be sure I was getting an accurate response. Again he said, “No,” and in fact added that he wanted me to stay in my house. I started to repeat this, to double-check, and suddenly he said, “NOoo,” and then, “Love you, bye.”
He rarely says “love you,” maybe never. I think he has said, “I love you,” previously, but I think it was prompted by staff. This “love you” was not. So, Nat had generalized something I say to him each time we speak on the phone, and he had chosen to slide it in right when he was basically telling me he didn’t need me at this moment. He was looking out for me, as I was for him.
Next time people say that autistic people don’t really care about others, punch them in the chest.
I wish I knew, I wish I knew
What makes me me what makes you you. — Cat Stevens
Yesterday I was, of course, riding a bike (stationary this time, because it was raining) and Nat’s and my song came on my shuffle. And there it was, all over again, my Nat feeling. Hits me full on, heart and core. A tender pain, sweet, really. I used to fear it, I used to think it meant bad stuff like I’m still grieving. I have said that for years, that the grieving never goes away. But this was different. Not grief. Sweet ache, delicious. I saw his baby head for a flash, blonde and Charlie-Brown round. And I thought, “Yes, it’s true, I have gotten so much out of that person.” Then I thought about how some would find that selfish and say, “He wasn’t put here so that you could learn from him.”
I never said Nat was “put here,” though his name does mean “gift of G*d” in Hebrew (Natan-El). But Ned and I gave him that name. There was no discussion. If it was going to be a boy, it would be Nathaniel. A girl would be Melissa. That was that. Some would ask, “where did you guys get the idea to name him “Gift of God,” though, if not from some Other Source?” Yes, sure, that is a valid question. What makes something right, though? It was simply the right name at the right time.
And Nat is a gift for me. Getting to know Nat and loving him — first blindly and instinctively, mother animal-style, and then, learning his personality and soul, person-to-person — this has been a singular experience. Nat’s existence has shaped me, made me see the world, people, life, in a different way from Before Nat, irrevocably. And how do I now see the world? With compassion. With rachmunis. A knowledge that things are not exactly fragile, but soft. The ground below our feet shifts, there is no certainty. If we can live with that, we have learned a lot already. If we can find happiness given that, even better. That is what Nat has taught me so far.
The challenge is figuring out if it’s okay the way it is. One specific example of “is this okay?” centers on how much of Nat is the autism, how much is the self. In other words, what parts of Nat’s being were okay to put under the microscope and alter (the autism) and what parts were sacred.
Turns out it’s all sacred! But that doesn’t mean people can’t try to improve and change. Again, because of Nat, I have learned that we are the whole package, but because we are humans with the ability to reflect, we can change aspects of ourselves in order to be happier, to exist more successfully (successful, that is, pertaining to the soul’s achievement, not the wallet’s). So one of my jobs as Nat’s mother has been to help him be his best, most successful self. To help him not fear, to help him understand and finally, to love the world. And in being reflective in this manner for Nat’s sake, I had to learn about that very same thing. You can’t teach unless you understand.
I suppose what I’m trying to say is, my most cherished lesson has been that what makes me me and what makes you you is sacred. The world changes, our actions may be altered; we learn, we achieve — but our souls are just there, and we discover them. We lift our souls and our children’s souls out of the darkness, out of solitude and bring them into the light. Autism can make that more of a challenge. But we are not meant to be solitary and in the dark. So we live, stumble, reflect, and learn. And if we let it, our soul lights the way.