Susan Senator

There were times when Nat was growing up where I would become what I call “a little manic.” I used to get this way when I saw sudden lights going on for Nat, that awakening we parents hunger for. I’d see he was getting it, moving to the next level, and I would then flip joyfully into mania. I’d want to sign him up for things. Higher level classroom. Activities for the family previously untried. The sky was the limit.

This was not necessarily bad. This kind of episode of mine would lead to more attempts for Nat at new competencies. Even if things failed, we’d learn something. And hopefully, we’d try again a little later. So there I was, sitting in one session at this conference, and feeling manic; I’m at a conference on disability and transition into adulthood. I’m here on business;  I work for CCCAID, The Community College Consortium for Autism and Intellectual Disabilities. That’s right, folks, COLLEGE for guys with involved forms of ASD, and IDs! My consortium is working on extending the mission of community colleges by offering access — higher education, job training, job connections, and even independent living training.  There are federal programs, funding streams, that can possibly be leveraged for this purpose, to provide real, useful training for guys like Nat. (See CCCAID.org for details on where these programs already exist.)

The session I attended before just blew my mind. It was on SSI and Medicaid. Not many people would cry after sitting in an SSI workshop at a conference, but there I was, crying into the phone, talking to Ned (I’m in DC). What was I feeling? That scary tingle of hope.

Sometimes I dread hope because with it comes work. I have to some work now if I’m going to follow through with this feeling. But I’m getting ahead of myself. I have to process what I’ve learned.

The main thing I’ve learned is that people like Nat can indeed work, earn money, and NOT lose their Medicaid benefit! BUT they have to follow the rules. There is still the limit of monthly assets never being more than $2000 at any one time. And of course if your paycheck exceeds $698 a month, you can no longer receive that SSI money. But if you have a disability that severely impacts gainful earning, you can still get Medicaid.

There are various Work Incentive Programs that allow people like Nat to use earnings for any work-related expenses. Even job coaching can be considered a work-related expense! So you can submit your work stubs and receipts to show income and service used, and still earn more than the SSI allotment, as long as you stay within the maximum monthly limit. In addition to this, you can figure out how limited you are in earning full-time and deduct that percentage from your income. So if Nat were to work at 50% capacity, I think this means that 50% of his income does not count towards taxable income. I think. My head is spinning with all I’ve learned, and I need to check on all of this. So please don’t just take my words here as any sort of professional gospell.  Check for yourself.

I guess what I’m feeling is that because Nat is enjoying his new supermarket job  and he’s suddenly earning more than I’ve ever seen on his check (it’s still way under the SSI limit), I have started to wonder if he could start to pay for more job coaching by taking on more hours and thereby stop doing the Day Hab part of his week. If he worked more and earned more, he wouldn’t be penalized because he’d be spending income on more job coaching and remain under the limit.

If he were to start earning so that he made more than $2000 a month, he would lose his $698 a month check, but he could still have Medicaid, as long as he was spending his money on rent, food, and anything related to his special needs. But this means he could have an income that pays for an actual Boston apt rent and he would not need State money anymore!!!!!!!!!!!!!!  I do not have enough energy for more exclamation points, but that is what it would take to express how this makes me feel. Nat could get off some of this state ddependence. Oh My God.

If I have this right. I just don’t know if I do, but I have these speakers’ cards and emails, and so I am going to check it out.  You can, too. Write to amy.wallish@fullcircledc.com  My organization might consider bringing her to an event for CCCAID at North Shore Communiity College in Massachusetts, by the way.

If I can make this happen — and really, it means that Nat would be making this happen — then I just don’t know what. I just don’t know. To me, the sky’s the limit — and yet Nat is still profoundly autistic. Yes he is. Go figure. And remember not to be afraid of hope.

Often, in scrolling through the many autism parenting blogs, I come across the sad wish, “If I could only, just once, hear my child say those words to me: ‘Mommy, I love you.'” I remember that wish. Even now I still have moments not of wanting to hear Nat say he loves me but to know what he is thinking. But for the most part, I no longer feel that raw loss, the grief of having a child who does not give that kind of typical verbal feedback. That is because I learned to read Nat’s own signs of love, connection, interest, and so on.

You know that when you are alone with your non-verbal, very autistic child, that something is there. He may be rocking, eyes closed, stimming, talking apparent gibberish, but you feel something. There is a bond, a connection. Is it one-sided? Deep in your heart, you know that there is something between you and him. But when you go out into public, maybe it’s lost because you are back to seeing him from everyone else’s perspective, as having deficits, rather than difference.

Most parents who are sad about their children being non-verbal and apparently uncommunicative, uninterested in anyone, are trapped in their own worlds. I am not being facetious; I see this (compassionately) as the truth. It is so difficult for us to get out of our own heads, our cultural signals, our learned responses, that we may miss what our autistic children can and are saying. Because they are saying it in their own way.

Autism theory is stacked against us from the start. We enter into the world of autism diagnosis from a negative standpoint, where we are told that something is wrong with our child, that he can’t do this and he can’t do that. He is described in terms of deficits and disability, rather than seen as different.

Maybe some of you will dismiss what I’m saying here as flaky and Disney-like: Listen with your heart kind of stuff. Fair enough. It sounds like that to you, and it did to me. Until I gave myself permission to believe what I sensed about Nat, until I had confidence in my ability to read his signals, his ways — I, too, saw him as cut off from me.

We all do it. We think that autistics have no ability to read emotions in others, that maybe they don’t even care about those emotions. Temple Grandin herself taught herself to understand what others’ emotions looked like on their faces, and how to respond. True. She did not know this stuff implicitly.

But it was there. It just looked and felt like something else to her, until she learned to see and feel it all our neurotypical way. The problem comes when we assume that autistics don’t actually feel emotions simply because they don’t know how to name a feeling, or how to respond to us. They may not know the language of emotion; that doesn’t mean they don’t know emotion, however.

I can’t believe I ever subscribed to the Theory of Mind ideology, as it applies to people on the autism spectrum. Nothing personal against Dr. Simon Baron-Cohen, who long ago enjoyed Making Peace With Autism and blurbed it, but Theory of Mind in terms of autism is some bad shit. Because it fosters hopelessness. Even if it has clinical truth to it — proof that a person with autism cannot have empathy, cannot put themselves in someone else’s place — TOM is one of those theories that asks the wrong question. The question itself — Can an autistic person know another person’s mind, feel another’s perspective — that propels the TOM research, is tainted by the old-fashioned view of autistics.  The old, poisonous way of thinking holds that autistics are a monolithic group with all the same limitations and problems, rather than individuals with combinations of challenges articulated differently in each person.

And yet, people on the spectrum are just that:  people on the spectrum. Snowflakes and fingerprints, dude. Infinitely different strengths and weaknesses, just like everyone else. Which means that in order to get to know what it is that they know, think, feel, you have to get out of your own mind and try to inhabit theirs. Ironic, isn’t it? Theory of Mind experts measure empathy and theory of mind from their own particular points of view, and judge autistics for not being able to visualize another kind of mind.

If TOM is inherently flawed because it judges other (autistic) minds from its own non-autistic perspective, then it stands to reason that judging mental ability based on ability to speak is also flawed. It is your own shortcomings that prevent you from valuing and understanding other, non-verbal forms of communication. It is the shortcomings of the theorists, not the subjects.

Once we as parents give ourselves permission to believe what we sense, to believe what we feel our child is saying non-verbally, we are well on our way to connection.  Once I realized/assumed that it was true that Nat cared about us, about people, and that he understood some/most/all of what was being said around him, my behavior changed towards him. My outlook became confident and hopeful. And either it was that Nat responded to me being this way, or it was that I now could read him better, but the outcome was the same: he does want to communicate, but on his own terms.

Today I tried a new thing: I asked Nat if he wanted to type a message on Facebook. He said “yes,” and he used my account. When other people wrote him back, I showed him. I had him read their comments. There were a lot of comments, as I’d gathered a lot of followers and friends over the past few months. Part of the reason for the huge following was the fact that I bought likes as I felt that there is nothing wrong inbuying likes from TheMarketingHeaven.com. He thought about them for quite some time, and then he would say one word out loud, and I would say, “Type that. Tell them what you are thinking.” He would then type the word, pause, and I would help him again — not giving him content, just keeping him focused. “Tell them what you are doing today.”  I would almost whisper it. I didn’t want to make him run away, overwhelmed. He would wait a while, finger hovering over the keys, and then he would say a word, like “Races.” I would ask him what he meant by that and he would explain:  “Swim races.” So I would then say, “Type that.” Sometimes he would start a comment with “nat.” Sometimes with just his word. I would always tell him, “Great!” and then ask him if he wanted to say anything else. He always thought for a while, and then he might type something or if he seemed really tuned out and looking around, I would ask him if he was finished. If he said, “yes,” I would hit the return key and show him his entry, and thank him for writing to these people.

This is deeply exciting to me. Nat clearly wants to communicate with people, and you can bet I am going to light a fire under this one to make it happen. I remember when Nat was four or so and wishing desperately that he would understand that it is a good thing to connect to people. I was at such a loss as to how you make someone understand that.

Sometimes you just have to wait. Do everything you can, but also — wait. It’s so hard, but it is better to wait decades for something than to think it will never happen at all. So why not try & wait at the same time?

Friend me on FB (tell me who you are because I don’t friend just anyone who asks) and you will see for yourself.

Yesterday I mentioned that I want to write a new book, which would almost be Nat’s memoirs of the past few years, as imagined by me. I see the past few years of his as a time of immense growth, and I’m fascinated by it. The things that fascinate/bother/anger/sadden me are the best places to start writing. I am intrigued by Nat’s communication development, and his centered approach to things. I just finished a book that has given me a way possibly to write about this in novel form.  A Turn of Mind, by Alice LaPlante, is about a woman with advanced Alzheimer’s, who is accused of murder — and she doesn’t know if she did it. The entire book is from her perspective, her thoughts, which go in and out of clarity, but are always about something. Thus we piece together what happened, and we get to know Jennifer, the main character as well.

This is the way I want to write the book about Nat, which I’m thinking of calling You because that is Nat’s form of first person. Thinking back, I see the change in Nat starting with his 17th summer, when he went off to Extreme Sports Camp in Aspen. This was how the blossoming began. And ironically, this growth occurred during a particularly difficult time with Nat. In fact, things were so tough at home those days that we had begun planning to transition him to the residences at his school. Ben was living in fear of Nat’s outbursts (screaming, jumping hard, hitting). I felt like I couldn’t trust Nat anymore; so many things bothered him. He would ask questions over and over and we would answer over and over and it never seemed to help. His school’s advice was to redirect him, answer only a few times and then tell him we were going to talk about something else. But this frustrated him. He had to hear more of it. Sometimes explaining the things again and again did help him calm down. Other times they seemed to feed the fire. Why?

I don’t know. But Nat went away, first on his amazing week in Colorado without us, and then a year later to the house near his school. The year in between had its hellish parts. More and more of the questions without end, without satisfaction.

Until we figured out that what he was doing was telling us that something was out of whack; a break in a routine, a light not going on, an i not dotted. The repeated questions/statements were not because he didn’t know something but because he didn’t like something. And the answer didn’t satisfy him, didn’t set it right.

Somehow we figured out that we needed to tell him that the thing bothering him was indeed going to be rectified at some point. I started to feel a little bit happy to explain, rather than anxious to quash the question. I felt happy because I saw that it worked; Nat listened to my answers, watched my face, and learned to trust my explanations. It began to be like just about anything I heard him repeating, I would listen to carefully, try to find the decipherable word as my clue, and think-think-think what was it about that thing that could be bothering Nat? Like the time at the supermarket when he kept inserting the word “bag” into his self-talk phrases. We were in the car and I became aware of “bay-ag, bay-ag,” and my mind flipped through the possibilities, and seized upon the cloth bags that I had used instead of plastic. New bags! Wrong routine!  Solving puzzles has always been fun for me, and so I kept my fun feeling with me as I explained to him about how it wasn’t good to throw too much stuff away, like bags.

I think that the small happiness I felt, even with anxiety over his outbursts swirling around, was like the eye in the storm, and it transferred itself to Nat. He could probably sense that I had gone from “Argh, stop the questions! But don’t get upset!” to “Hey, I know what you’re asking about! I can explain that to you!”

And the final flourish I added was to say, “Okay, Nat?” when I was through. Something about that check-in also gave him comfort. Was it because he knew I cared what he thought, that he understood? Or was it that it provided a nice bit of closure to our conversation? It doesn’t matter, because it “worked.”

And so I’ve been thinking about starting there, digging deep into events that happened when he was 17, in 2007, and imagine the thoughts in his mind, the feelings colliding with our actions towards him, and where those feelings went, what they morphed into. Then, also, the first moment he felt that I really wanted to help, rather than stop, him. What did that feel like? How did his thoughts look? What did he notice?

This is, of course, going to be a novel, because I can’t ask Nat directly to get the answers, to be his biographer. At least, not yet.

I’m at another pause in my days; this usually happens in May and June as things slow towards the hot languid pace of summer. I don’t know what to do with myself, especially given that I’m not often called upon to mother my sons. They are so independent, each in their own way. Rising while I float. I guess I’m reflecting a little, considering where I am and where I want to go. I know that my journey is still a path parallel to my boys, winding around them but still separate.

I’m thinking of writing a new book, which springs from stuff I’ve learned after writing Dirt. In Dirt, the best part of the book was Nick, the teenager based on Nat. I tried to be inside Nick/Nat’s head, I tried to be him in order to make his character real. I wanted a character who had full-blown autism, because as most of my readers know, full-blown autism still means full personality/personhood, and yet so few people realize this. I do, because I’ve lived with Nat since his conception, February 14, 1989. That night, after a Valentine’s Day Thai dinner, and after love, I saw this star burst in my mind, in the dark. That was Nat.

I wouldn’t say he was a mystical child, but I will say that he was my firstborn, and therefore utterly special because before him there were none. Thoughts of his earliest days fill my heart with the most tender pain, which comes from slicing open delicately the flesh of your life to make room for this new one.

The fact of our connection is the mystical thing, the wonder of my life. I want to write about that, but especially I want to write about what happened to Nat himself. I’m thinking that this book will be Nat’s story — it has to be a novel because it is imagined — but it will be born of my connection to Nat, and his words, to whatever degree possible. I haven’t always felt connected to Nat, and I guess that’s because for his first 10 years I was afraid of him. Not constantly, but it perforated my relationship with him, shot it through with holes. I was learning, and learning isn’t easy. So it wasn’t until I had that epiphany that day, when he was 12 and just horrible, and I was tickling him, poking him because he was fake-laughing and being so annoying, that I didn’t know what to do, so I just acted without thinking. No shield of thought going up, no adult analysis; just a natural reaction to an annoying kid you love. That moment, when our eyes met and we were suddenly laughing together at the same fun thing — our play fight — there was another star burst, and I knew that he was mine, really mine. No more fear.

The years they are a-flyin’ and I find I am an Old Mom, and my sons are growing-grown. There is a distance again that I feel with Nat (and Max) as men; Ben as an emerging man. There is just this maleness they exude that gives me pause. It’s funny to think that now although there is distance there is no fear, no sadness. It is just another tender pang that I feel for them as I hang here, and they climb skyward towards their zenith, my three stars.

While raising our kids to be able to advocate for themselves, we also need to still advocate for them. That job never ends. In my case, Nat is currently not communicative enough to tell us specifically what he needs in terms of housing, so I have had to use my best judgement.

I don’t think parents realize their own power. I don’t mean power in terms of beating or besting someone; I am talking about the ability to make things happen — the power to fulfill certain dreams. Many of us give up, to one degree or another.  But the thing is, we should not. So many of you come to me with open terror about autism adulthood. While there is reason to be proactive, there is also opportunity to stop and think about what you and your adult child want, and to keep that vision at the front of your mind.

Why is it working so far, in Nat’s house? Staff? Location? Roommates? All of these and one more: the parents are active in making their opinions known. We are not afraid to speak up at the family meetings –once a month, with staff and house manager — and give our input. Our service provider (the organization we chose, licensed by the state, who hires and administers staff, budget, etc.) is open to our ideas and they have organized the house according to our wishes — within reason. If one parent wants to choose or even veto roommates, he cannot. The ultimate placement decisions lie with the state that is providing the funding. Traditionally the state has not wanted to support these parent-input person-centered-planning ventures because they feel that parents get too hot under the collar. They feel it is liable to fall apart. While they are right to be concerned and cautious when giving parents a say, the Department of Developmental Services should also remember that their own state-run homes fall apart, or people withdraw, too.

Parents in our situation only let everyone how they feel, but they cannot expect to get their way, necessarily. Still, the service provider is obligated to factor everything in.

The house manager and service provider staff do listen to us when we talk about how we all want young men who are active and interested in socializing. Being verbal is not required; rather, it is the social willingness we are looking for.  We also want them to be the same basic level of autism and ability, but of course with their own differences, so that they are comfortable with each other but could also learn from one another. We did not want mixed disabilities, mixed ages, or mixed genders. We were thinking about what we would like when living with roommates, or what is typical of guys that age (in their 20’s).  I mention this because sometimes it is an interesting set of possibilities when you mix disabilities, ages, etc. A person with CP, for instance, would bring with him staff for physical care, which gives the house an additional staff person(sometimes). But to us, the abilities would be so divergent it would not make sense.

Our service provider heard us and the young men are well matched. This does not mean there have not been any incidents our outbursts; that goes with the territory of these three young men. But the staff have kept them safe and continue to take them out into the world to do food shopping, runs in the park, trips into Boston, the beach… All the things I wanted for Nat’s from the beginning.

And for once in my life, there have been very few surprises. The parents planned so much with the service provider and each other, that when the guys moved in it felt good, even though there was almost no furniture or food!

Successful adulthood housing arrangements are about putting your thoughts down on paper, fearlessly. Talking to people who have been there. Learning the funding steams and what is available, what you can afford. Don’t be hampered by worry. Keep writing down your questions and you will stay focused and when you come across an expert you can ask. But just as you’ve done for your kid when he was growing up; you push your agenda — politely and tactfully — and you don’t accept answers that feel wrong.

You can do this. Stay strong and focused. Eyes on your kid!

Please contact your US Rep! It is easy when you use the capwiz application.  This is not about handouts. This is about a leg up!
House to Vote on Bill that will Cut Billions from Disability-Related Programs

Tell Your Representative to VOTE NO on the House Budget Reconciliation bill.

The House Budget Reconciliation bill is expected to reach the floor of the House of Representatives on Thursday, May 10.  Programs for low-income people – children, families, seniors, and people with disabilities – would be hit hard by cuts in the bill.

Your help is needed to educate your Representative about the need for a balanced approach to deficit reduction.

Some examples of cuts in the bill that will weaken programs serving people with disabilities and other low-income populations:
The Medicaid program would be cut by $28 billion over 10 years through changes in provider taxes, hospital payments, maintenance of effort (MOE) requirements, and payments to territories. People with disabilities are likely to face decreased Medicaid eligibility and benefits as the states adjust to the reduced federal participation.
The Social Services Block Grant (SSBG) that funds special services for people with disabilities will be repealed.
People receiving food stamps (SNAP) will see their monthly assistance reduced; 2 million people will be denied SNAP help altogether.
Please call your Representative and urge him/her to vote “NO” on the reconciliation bill.

What to Say:
Please vote against the House Budget Reconciliation bill.
Deficit reduction cannot be achieved solely through more spending cuts for programs that serve people with disabilities and other low income populations.
Revenues must be part of the equation.

Use the Arc’s Capwiz tool to send an email — easily! Save food stamps and other supports.

Every now and then Nat tells us he would like to send an email — well, we ask him if he wants to and usually he says no. But today he wanted to. This was after we had a conversation about his new job, which is at a supermarket near his day program. Nat told us that he “used the computer” (and indeed, the job coach trained Nat in safety skills on the computer) and also that he put the carts “in the right order.” We asked him where he put the carts and he said, “in the cart,” which is also accurate; they get shoved one into the other, as we all know. (The reason I comment on accuracy is that in the past Nat has had default answers that he gives when he wants to get us off his back and stop talking to him. So often he would answer correctly but untruthfully. But when he is in the mood to communicate, he struggles to find the precise word he wants and you can depend on this being a recap of exactly what happened for him.  When he opens up to us like this, it takes my breath away — but never my words. I store it away and then I have to tell the world, write it on thy doorposts and upon thine gates, that this is a real person, with an entire inner life, and just a different way of living it or talking about it. That fact is of Biblical importance to me.)

Back to the conversation itself. He has also told us that Sean is his job coach. And Holly is his house manager. You will see in his email that each line is a separate paragraph, about a different topic!

The cool thing is that the whole conversation began with Ned asking Nat what was going on, and Nat replied, “Not much.” He is really learning how to converse the way we do, down to the silly small talk. (Chit chat is the true silly talk, not the self-talking Nat does, which actually has meaning!) But I think maybe emailing works for him because it is in a clear context: you are writing to someone, not simply for the sake of writing (after all, who in their right mind would write just for the sake of writing? Oh, yeah, never mind…)

And here is the email, which also talks about what he did today — he went to the swim qualifiers for the Special Olympic State Games which will happen in June. He won gold medals in all three of his events. He told us “lunch schedule,” and by that he meant, we should stick to the schedule and give him lunch after swimming.  It’s all there in the email. Read it for yourself, and see how much you can glean about Nat’s life these days.

How are you? Swmming lunch car gold medal.
House holly reeses bed shop mom
Shaws work cart candy computer tipe sean.
Im good love
Nat

Nat came home and had a snack, after his snack Nat joined N for a 45min walk around the area. Upon their arrival at the house, Nat came with N, D, and me to the grocery store to pick up some dinner ingredients for the remainder of the week…— Very Abridged Notes from the caregiver, 5/2/12

I often think about how I learned to connect with Nat. There were three components: observation, education, and projection.  First — all his life — I would observe him, plunge deeply into my interactions with him just to gain a comprehensive knowledge of his ways. When he was a baby, I would do what any mother does — sit on the floor with him, gather him onto my lap, talk to him, read, sing to him — and watch and learn. We all get to know our babies and kids, whether we know it or not. They’re utterly familiar strangers, no matter how their neurology flows.

Over the years I have educated myself about people in general and autism specifically. The best thing I ever did I think was first to watch Amanda Bagg’s video In My Language, for the biggest brain explosion of my life. There Amanda — non-verbal and autistic — typed out what she thinks about her perception of things and why she stims, what she gets out of it, what things look and feel like to her. Why we have no right or even justification to impose neurotypical mores on her. I remember she says something about how beautiful running water is to her, something like that, and she kind of pities the NTs for not being able to feel that same fascination. After that, because of Internet communities, I was able to befriend certain adult autistics and ask questions about what does this or that feel like, what do you think about this, what should I do about that. And I also went to a few ASAN meetings where I listened to the conversations of autistic adults, and got a sense of what it’s like to perceive differently and more importantly, to be perceived as less than other people. That was and is my education in being autistic, all so that I could consider new things about Nat.

Projection, however, is neither intuitive nor cerebral. By projection, I mean imagining and hoping based on what I feel. I feel something when I’m around Nat, and who knows where the feeling comes from — could be him, could be me, could be both — and I make an assumption about its meaning. Because of the wide range of possibilities, however, projection is the most difficult aspect to get right. Where do my feelings end and yours begin? This can be hard to determine for some of us.

I have said before that depression is a part of my life experience, as is mood swinging in general. So sometimes I wonder if the sad feelings I had during Nat’s babyhood were about my own depression, or about realizing that there was “something wrong” with my baby. The nebulous borders of emotion are tricky and treacherous, but they can also be joyous. For the times that I have felt closeness to Nat, the times where I suddenly “get” him and he gets me — can there be anything better, in a mother’s life?

So just now as I was walking downstairs after waking up Ben for school, I found myself thinking happily about that particular routine, Ben’s, where I get up at 6, make coffee and his lunch, and then wander upstairs at 6:45 to get him up. He and I both know there will be several more wakings before he shuffles into the shower. It’s almost a game. And after I walk back downstairs, I feel happy for no particular reason, eager about the new day. It was this that made me think of Nat, and his day. Last night I’d read those shift notes from his caregiver, and saw all that he does, and this morning I wondered if he was happy with that. I felt a pang inside, worried. What if he isn’t happy, and no one knows it? That same old irritating sharp fear, like a tendonitis in my heart. But then, wonderfully, I remembered something: I’m the one with depression, not him. I’m the one who has trouble with certain boring routines, and other times I absolutely adore them.

Why should I assume that anything I experience is the way Nat does? Just as projection once aided me in connecting with Nat, in realizing back then that he is just a boy and not a puzzle or monster, it may also be getting in the way of my letting him go. He’s separate, different from me, grown up, and apparently happy.

Night after night we are watching Game of Thrones, Season I. (I say “Season I” because I have not yet seen Season II so do NOT spoil it for me!)  The character and situations of Tyrion fascinates me, in terms of his disability. Tyrion Lannister, played by the outstanding Peter Dinklage, is a dwarf born to a wealthy and powerful family. He is well-educated, well-dressed, and highly sophisticated in his outlook on life and his self-expression. He is not trained in weaponry, but he is very brave. If he heard me say he was “very brave,” however, he would probably slice me up with sharp sarcasm. You don’t patronize this guy. People learn this quickly with Tyrion. When one character asks him why he reads so much, Tyrion replies, “Look at me,” and points out the obvious: that he is a dwarf that no one would care about or respect or fall in love with.  But he tells the other guy that he loves living and therefore does what he can to enjoy himself.  He blatantly pays for his love and sex, he bribes his way out of any diffficult situation; he even gets another character to fight as his proxy in a duel to the death.

There is much to admire in Tyrion. Probably the best thing about him is his outre character, his unabashed participation in everything around him. He doesn’t shrink from the public, even though people call him “Dwarf,” and “Half Man,” and worse. His skin is like rock; nothing like that bothers him.  He knows who he is and the attitudes of others toward him mean nothing. Tyrion is a great example of inclusiveness — the family treats him almost like an equal, but not really, though even this is more than I’d expect from people living in a Medieval-like era. They don’t lock him away, or kick him out on the streets to beg for his food. The way he is just a hair beneath them (no pun intended) makes sense because these are not supposed to be modern times. What I love the best about the portrayal of Tyrion is that people’s treatment of him does not stop him from getting what he wants and living a fun life (such as it is in such a brutal culture and era). He never corrects people or asks for Person-First language.  It got me thinking about how much more sensitive our society is to the use of words and the need to accommodate — which is very much the way it should be — however there is something stunningly admirable to see a character like Tyrion fighting everything and everyone just for his dignity. No one loves him like an equal; and yet more than once Tyrion says how much he loves life. Watching and listening to him, it is easy to see that this is true.

To go out in public with such an obvious difference from everyone else — this just takes my breath away. If you read this blog you know that I have always had a problem with going out in public with Nat, though less so these days, because of the way people stare at him when he does his self-talking. The anger and sadness I feel when I see that is like an iron ring around my neck. But if I could be like Tyrion, and just focus on the love of life and my dear son, nothing else would matter.

Driving away from Nat’s house today, I was unaware that I was happy. It only occurred to me later in Home Depot (getting mulch with Ned) that I didn’t feel the way I have sometimes felt in the past after dropping Nat off. The bad feeling is a little bit of the emptied-stomach grip you get with fear. Empty stomach, cry in the back of the throat, smile pasted on because I’m trying. I didn’t feel any of that today.

All day I’ve been trying to figure out why. Certainly this is not the first time I felt happy there. The house itself is a happy space. I don’t know why. I didn’t buy it; the other mom did. I helped decorate it, but this is more than bold-colored furniture. It isn’t even the style of house I like and there’s some ugly fake wood on the inside of the front door. Clearly this is not about looks.

Whatever light there is streams into the front of the house.  It’s like a sunshine sponge, airy and light, sweet and full. Along the southern wall is a typical suburban living room picture window. The floors are bare, new oak that also reflect light, and the walls are a creamy yellow so everything is airy gold. Somehow it seems like every time I’m there the sun is out.

But I don’t always feel happy there, nevertheless. Sometimes there is an unsettled feeling, like no one knows quite what to do. One roommate walks around slowly and looks puzzled a lot. He asks the same questions frequently. He asks me which kind of hug he can give me (it’s always the same: a friend hug, which is side-by-side, arm across the shoulder.) The other roommate bounces here and there, ricocheting off the walls. Nat does his fast walking from his room into the living room and back, and his eyes look too big.  The caregiver stands in the middle of it all, calmly talking to us (Ned and I nearly always go together, which helps).  But maybe it felt like too many planets orbiting, and anyone who reads my blog knows that I hate orbit. It is too lonely.

Today the caregiver had a plan that really sounded like a plan. Kite-flying day in a nearby park, with an autism group. So, a non-judgmental outdoor activity with a lot of people.  A radiant day, and Nat looking very purposeful, very ready for us to leave.  When Nat wants people to leave, it doesn’t mean he doesn’t want to be with you. It means that the next thing that happens is on deck and that didn’t include you so you should no longer be there so that the next thing happens the way it is supposed to happen. For so much of Nat’s life, perhaps his greatest happiness is to know what comes next and then for it to happen so that the next thing can happen, too. I used to draw up calendars for him, perhaps 6 weeks at a time (whatever would fit on a piece of paper), and most of the calendar would say: “school, school, school, school, school. No school, no school.” And then the next week would be the same, with occasional appointments and events interrupting the flow. This is how Nat developed an understanding of time, of how weeks work.  I used to sit down with him, whenever I’d made a new calendar, and read it out loud to him. More than once. Then the calendar would end and I would wonder if he could just go on and on, to the end of time and remind me: “After life, death!”

I wanted to leave, and get onto my next thing. And I felt like Nat did, too. That may have been it: we both had plans.  No, not really plans. Just Sunday sunshine stuff to do.  I wanted to leave, and get onto the next thing.  And all my stomach felt was hunger, real hunger (I’d just had a 14.7 mile bike ride) — no sad fear.  I felt scrubbed out like a big white bowl, fresh from the dishwasher. I was thinking vaguely that after this Ned and I would find a place with sandwiches and just eat them outside somewhere.

So maybe this warm sense of regularity was baking in the bright living room air, like almost-ready cookies, giving us all a sense of anticipation for what’s next, even if it meant that we were not going to enjoy it together.  Not like lonely planets in orbit, but like bright white stars forming constellations.

When I was a little girl, I had gerbils for pets. Queen Victoria and Prince Albert. The times that the Queen gave birth were so exciting. It seemed like on every holiday, actually, there’d be a new litter: 5 naked pink gerblets, mashed together like  fingertips. But there was a danger: the weak ones could be eaten by the parents. “It’s nature,” Mom and Dad would say. “Ew!” Laura and I would say, fascinated. How could a mother eat her baby? Kill her baby? But sometimes, horribly, they do.

We always hear about the law of the jungle, and survival of the fittest, as if that is the way of all things. And in many ways nature is like that. And this provides some with justification for not helping the needy. Worse, this belief allows some to believe that the needy — the weak, the “damaged,” the non-normal — get what nature intends. What they deserve.

This is the most primitive of beliefs, since it comes from animals. But if you think about it, even animals themselves don’t always kill the vulnerable. There are stories of animal friendships, Mowgli-like tales where one species nurtures another, where wolves and dogs look out for humans, where gorillas adopt kittens. Mythical stories like Tarzan, and Androcles. It is not the way of the world, then, if there are memorable examples of other ways.

Every religion admonishes us to take care of each other, too. Why is it so easy, then, for us to forget? I just spent two days in Washington, DC with a ton of other disability advocates as well as CCCAID, the organization I’m working for as Director of Autism Adult Services and Outreach. I met with staff from six different Senators and Representatives offices, all to discuss the need to maintain supports, lifelines really, for people with disabilities.

I talked a lot about the ABLE Act, which is legislation that would allow for families to save money for their disabled children in adulthood, so that they would not lose benefits like Medicaid and SSI. Why shouldn’t we be able to save for our needy children when we save for the non-disabled ones? We take aid for college as well as pay our own money for it. How is it that different for our more vulnerable children to take aid from the government — because statistically they will have a harder time than their non-disabled peers earning nearly enough money to survive — to supplement their needs?

But what’s the “pay for?” I kept hearing this from the aides. “How do we pay for it?”

“We are one of the wealthiest countries on earth,” said Senator Tom Harkin of Iowa, at a reception I attended Tuesday night. And I say we are the lions of the world. We have a fantastic, rich and bountiful country; we have power, wisdom, and the best form of government on this earth. We can take care of our young, and the young of others, regardless of their struggle. We’re not gerbils. Let’s be more like the elephant and the sheep. The bunny and the guinea pig. Koko and the kitten.

But some parents are so scared for their children. They don’t know how to protect them from the world. A world with no certainties, and the threat of disappearing safety nets. In many places there are no safety nets at all. In D.C. this weekend, one mother told me that she knows parents who hope that their children die when they do. They love their children deeply, and yet they hope this.  These are not the parents who kill their children, who drown them or imprison them in a flaming house. These are parents who have no faith, no hope.  They do not want to see their children suffer, and they think that when they go, their children will indeed suffer.

They are sad parents, despairing about the world. And they are so wrong. They have no right to decide that, not about their living children. But they do have the right to be angry. They should be angry. Not at their children, nor God, but at the selfish people who would cut their lifeline funding.

There is always hope.  But hope does not come easily. Unfortunately, just as we have had to work so hard to nourish and nurture our disabled children, we have to work just as hard to help them live adult lives. We can’t turn from that responsibility. And we have to work together to keep our hope and possibilities alive. Life takes work. Hard work. We can’t give up.

We cannot allow our elected officials tell us that programs like Medicaid and ABLE will be eliminated or not enacted because of money. That is cowardice, not prudence. It is not even conservatism; this is not about being careful and watchful of funds. This is about letting people founder. Not helping our fellow man. If we are talking about not funding and helping with those who are more difficult to manage, then we are essentially talking about dispensing with them. Don’t believe what the Tea Party says, about how paying lower taxes somehow restores America to its greatness. The truth is less glamorous, but nevertheless, it is the truth, that lower taxes = less money for supports for the disabled = saying we don’t care.  It is cruelty.

The answer is clear, but very difficult. It is dreary and arduous. It is about one person at a time, one vote at a time, one phone call or email to Congress at a time. But we have to believe in the collective good, that there is power in that, but we all have to do our share.

I don’t want to scare you or make you nauseous. But I’m going to go into the rabbit hole tonight (I’m also watching The Matrix with Ben and Ned), and take you with me if you want.  I’m going to ask you to face your child’s adulthood.

In terms of nuts and bolts technical autism adulthood information, I do not believe I am the go-to source. That kind of knowledge is not my forte; I’m not a big details person. But I am talking to people who are, who have the sharp minds to pull apart the messy clumps of information about adulthood issues — primarily housing and day programs. I want to give a plug to the friend who helped me today, because even though I am not ready to use her info specifically, I owe her and her organization at least that. So click on Autism Housing Pathways and donate something, anything, right now, before you continue reading this. AHP is going to be one of the premier places to learn about housing models, for all sorts of people up and down the Spectrum. And learning about how to put together a home, how to leverage whatever resources you’ve got as well as the three building blocks: SSI, Medicaid, and Section 8.

Piecing together an adult life for your autistic child is not going to be easy, especially given shrinking budgets. But the thing to know is, you must face it. Now. Even if your child is 6. You think about college, you can think about this. Right now it doesn’t seem like much fun, but that’s because you’re thinking, “Ew, if it’s not college, what is it? A life of van travel and decrepit, shoestring day programs? Mall walking and group dinners out at Bugaboo Creek?

Well, yes, maybe, but also, no. I’ve said this before, but it bears repeating. You have to get past how it all looks. First of all, physical appearance is always deceiving. It’s true but it isn’t the whole truth. Nat does all those things. But he is happy doing those things. He is happy. So who am I to say it is not a good life? Because it may look, at times, pitiful?

There is no adult in the world who is as cute as a child. So it is with autistic adults and autistic children. At some point, all children stretch out and pad out into greasy awkward teens and slowly morph into crusty adults. It’s not always pretty. This is perhaps a metaphor for adult disability. It may be hard to look at adult disability at first. I’m sorry, that is a possible truth. It is how we are engineered in this day and age — to be smooth, sleek, symmetric, etc. Non-stim. All those Ableist things.

It’s not good, but it is a possible bias that is there within you and so the sooner you face this malaise, the sooner you can get over it. The ugliness is within us, and it is not our disabled children at all.

So once you know this, once you get past the strangeness, awkwardness, and all the other DIS kind of stuff, you just have a guy, a person that you need to get to know. Luckily, if this is your own child, you have not only gotten to know him, you love him, and so you are already past the awkwardness of all the DIS-related stuff.

I used to wish that people could know Nat just the way I knew him so that they would not think his behavior, his presentation, was ugly. That’s why I started writing. It was pure Mother Selfishness. I wanted the world to love Nat, not revile him.

So let’s say you are more highly evolved than me, and you are past all of that stuff. So then what’s the problem with facing that they are going to be adults with lots of challenges? You already have that in their childhood. Is the problem that you have to face that they may not go to a traditional 4-year college, live alone, work 40 hours a week, have a family?

I’m asking because I’m so different now, I can’t even remember!

Yes, I can. I still feel sad driving away from Nat’s group home! Even though I had a big hand in creating it!

But for the most part it has become so easy to just face it and go full steam ahead.

You, my friend, must plan. You must face different scenarios. You must deal with it. Emotionally, financially (start saving now, not in his name, make a special needs trust fund), and informationally. Bite off whatever tiny chunks you can, chew them, let them digest, leave them for a bit.

Then come back to your meal.

On the most selfish level, the most difficult part of having a child with a disability might just be that you have to face your own non-existence. Who the hell wants to do that?

But — need I say it? You, wonderful, lovely, unique you, are not going to live forever! Argh. I hate that.  And your child as an adult will need support one way or another. That is just a part of what his life will be.  The sooner you understand that you can and will deal with it, bite by bite, the better equipped you will be for that eventuality. And that, dear reader, is the best way you can parent and love your child.

The ragman he draws circles

up and down the block

I’d ask him what the matter was

But I know that he don’t talk.

—Bob Dylan

I come home and the street is covered with pale blue and pink drawings and signs. Big fat chalk stubs lie next to the curb in a pastel stupor. There are tons of powder-faced little kids in the street, balls bouncing, plastic scooters fallen over, and some of the kids I think I don’t know, and then I realize they are the neighbors’ babies, but now they are little people on legs. They’re drawing with chalk on the street, just like Max and Ben used to do. Selling cloudy lemonade and colored rocks. I am so old, I’m standing there in high-heeled boots and a handbag, while everyone else is in crocks and sneakers.

Nat is with us, walking back and forth, shaking his fist back and talking to himself. The baby, a neighbor’s kid, looks at him and says to my neighbor, “He’s funny.” And so it begins again, the long process of the next generation of children, understanding about Nat. I guess it’s human nature to notice what is out of place and talk about it. Or at least it is neurotypical human nature.

We had just gotten back from Nat’s house. Nat’s new roommate moved in today. We went to the house to have pizza with everyone and to bring Nat home for the night. I think it was a good idea to take Nat home and let him decompress; it’s a lot to suddenly have a new roommate and all the families there visiting. Plus Nat’s new roommate is extremely active, maybe even moreso than Nat. I think he and Nat will have a lot of fun together because they are so similar. They even eat pizza in a complementary way: Nat pulls off the cheese and eats the crust; his new roommate eats everything but the crust.

But Nat was very quiet. He and his caregiver had gone on a huge walk today, and he was worn out. I, of course, read into it, because I have been down lately, and so because I still haven’t detached completely from Nat, I assume he was, too. And maybe he was. Maybe he was mixed, because although his new roommate is great, it is a change.  I’d ask him what the matter was, but I know that he won’t talk.

But I don’t know. As I said, I’m in one of my phases where I feel outside of all my worlds, floating. I don’t know where I fit. I’m feeling like I’m orbiting around everyone else, except I feel connected to Nat, except that I don’t know if I’m right about him. Max is off having the time of his life. I am continually struggling with how much distance I’m supposed to give him. I’ve overthought it so much that nothing comes naturally.

Things are a lot more natural with Benj, because he is so forthright about his feelings. When I’m bugging him, you know it, he gives me a look or tells me. When he is feeling cuddly, he finds me. I wish the other two were like that. But right now Max and Nat are so apart from me that I feel almost done as a mother, and I don’t want to be done. Yes, often I love this new phase of life where I’m free. So free, I can ride my bike for 2 hours every day and still get all my work done. But I’m not happy today, or yesterday. I’m eating way too much, because there’s that empty pocket inside my gut. I don’t know how to fill it. Chocolate? A doggie? Ned and I went to look at dogs today, at the MSPCA, but I wanted all of them, not just one. So we came home with none.

Came home with our tall drink o water son, with the innocent eyes, more innocent than the boy-baby who pointed at him.

I tell myself this is just a feeling and it will pass, but I wish it would. I wish I was back down on earth again with the rest of the humans.  I’m over here, with my damned laptop, my addiction. So I look over at Ned and he says, “What, Susie?” as if all is well, as if all it is is that we’re just home in our livingroom while our sons live their lives, whatever they may be.

And kind of just like that I’m reeled in. For now, but now is good.

What’s important? It is so easy to forget, and lose yourself in sadness, grief, and regret. Especially as a parent, which is the epitome of hope — your decision to have a child is your expression of faith in the goodness of life, your commitment to keep us all going.

So what happens when we have our kids? We get caught up in something external to the child, something tangential to the reason we gave birth in the first place. We start living through our kids, rather than watching his life unfold.

I had a conversation with a friend today on the train, we were both done teaching at the same time, and she told me about how she writes. She has a unique and fascinating book coming out at the end of the month, and so I get a lot out of talking to her — we have both been through similar experiences via publishing and writing. She told me that her book came alive when she let go of trying to write it a certain way, or for a certain audience. It just was there for her; she saw and heard the characters’ conversations as if they were real. I have experienced that, too. There is nothing like it, when your characters become real.

I’m thinking about what my friend said because it applies to loving our children. I think that when we let go of that script, that frame around them — of what they should be and what we deserve to get from their lives — we are suddenly with them. They are real in a way they never were before, because they are just being themselves, their glorious selves. We can let them be themselves and rejoice in that. I think that is the contract we make with God (yes, I believe in God, you may call it nature or something else, whatever it was that made you take that leap into creating life). The contract is that we will be given the chance to have a child, and we must love that child exquisitely: with nurturing, educating, developing, disciplining. Yes, even that. Boundaries help them know where they end and others begin.

Why am I saying all this? Because of my friend, I guess, but also because I know that I enjoy my children more when I am just with them, plunged in. When I do that with Nat, just exist with him, next to him, taking my cues from him — that is when the love is the strongest.