Susan Senator

A few months ago I gave a keynote at the Making Our Way conference in Biddeford, Maine. Maine PBS has incorporated the talk I gave into a special, and here it is.  Just remember, I’m always happy to give a talk to anyone who will listen! You can contact me for your group through this website, or just email susan@susansenator.com!

The other two families bailed on us. They felt they needed to move more slowly than we are able to. We need Nat to have a structured place to live and I just don’t see us being able to set that up so well here.

I feel like I need to escape the very skin on my bones. I am so uncomfortable with this situation. I love my boy and I want him to be happy and stable. I have to regroup, think what to do. There’s Shared Living, which is when someone has their own apartment, with a caregiver. That might work but as Ned says, “It feels little.” It feels lonely. But would he be lonely? He would still have his Day Program and his social group and friends. It’s just mealtime mostly that he’d be just with the caregiver. And we are interviewing one this weekend; he might be fabulous.

But I am just a jumble of nerves, not knowing what’s next. My go-to guy, my guru, the one who has helped me so much with all this education and planning, is not around this week. I don’t really know how to get through this time. I’ve lost weight from the stress and upset stomach and too-much-biking to escape it all.

I’m glad for the weekend.

Okay, even though I’m stressed out of my mind and running on fumes — albeit nice-smelling Joy by Jean Patou fumes — I have taken time out, with my darling darling Ned, to sketch a cake for Nat’s graduation. Thanks to Candy Allen, a friend from these autism circles we spin around in, we have a concept and design that Nat will understand and enjoy.

We are making a brief calendar, of graduation day through Nat’s birthday (Tues the 15th). Each day that has an event will have the appropriate brief designation. This is just the way we have always done Nat’s calendars.  The difference here is that there will be three 3-D figures to add to the meaning:  a frosted stick figure in a cap and gown and blond hair Nat); a gray van representing the van taking him to the day program; and a tiny birthday cake to sit on November 15th.  Yay Nat will be at the bottom.  Here is the drawing I did:

One thing that’s been plaguing me about this effort to carve out an individualized adult experience for Nat is how much work it takes. It really is work. It’s stuff I’m not good at, either. Phone calls. Meetings. Broken up Sundays looking at apartments. Figuring out people without overthinking and getting all anxious. I have to make so many phone calls and go to so many meetings to keep everything and everyone on the same page.  I am getting sick of that page. How do I balance all that is going on right now, in terms of the logistical and planning work and also in terms of my emotions?

If we had just gone for a slot in an already-running, state-approved, group home, we’d be settled. It’s like that dumb billboard on Storrow Drive:  If Nat lived there, he’d be home by now, so to speak. But I wanted to make a setting for him that I could control. Location, staff choice, roommate matches, philosophy of the home.  I wanted to be able to design that to fit Nat’s needs.

It’s like way back when, when I wanted to create a school for him. Or homeschool him. I wanted to do it right, I knew what he needed, I wanted to do everything I could to protect him from stupid and cruel people. I brought him into this world fairly ill-equipped to handle any part of it and so it is my responsibility to protect that dear soul the best I can. That means thinking about what he needs, a lot of thinking. That means coming up with a plan. That means learning about how the mechanisms work. That means finding money. And that is just the shittiest thing ever: trying to get organizations to give money to something.

And that’s not all I’ve had to do. I’ve had to reach out, connect, meet, and charm. Cajole, raise consciousness, call people together. I’ve had to live on tenterhooks, hoping schedules work out. Trying to keep my own quick hot temper in check when people are not moving as quickly as I do.

I wanted to be able to select roommates that were a match for him in terms of communication abilities and desires.  Did they communicate? If not, do they want to be with others?  The wanting is the thing. Nat now wants to communicate or at least to be with people his age. So his roommates must be that way too, in order for Nat to keep growing and feel fulfilled.

If we had gone for the home we saw, Nat would have the same experience he has now in his residential school. Nothing wrong with that, and a lot quite right, even. But I wanted more than that. I wanted Nat to be working with people who have experience in his kind of trajectory — where he is headed — and his interests.  So I have been looking for staff people who are active, who like sports, running, biking. I have been looking for staff people who are well-versed in ADLs and not just management or damage control. In other words, I want positive people who believe in Nat and will try to push him and open doors, expand his life, not simply maintain it.

If we had gone with an up-and-running group home I would have no choice in where it would be, and so I would not necessarily be able to see Nat easily. I cannot see him that easily right now; it is about a half hour away and planning is required.  I want to be able to run into Nat or at least meet him places or know where he is on a given afternoon, simply because he lives nearby and so the kind of activities he does in the community will be obvious to me:  which ice cream store, which Starbux, which YMCA, which subway stop. Also, living in an area near me that I have chosen gives Nat a sense of familiarity and as we know with autism — or at least with Nat — familiarity breeds comfort breeds happiness.

So I gotta make all these calls and run out at a moment’s notice to see apartments where the parking is lousy because it’s the city and where the landlords might be weird because they’re used to renting to shithead college students. Where the air smells like pilot light gas and cockroach spray. And yet the landlords have the power. And they have the gall to appear skittish of my project here — my beloved son and his dear roommates — because they don’t know what a group home means or what autism is or they wonder if disability means difficulty for them, the landlords. (I don’t even know if they are thinking all this, I just feel it. I imagine it. Try talking my imagination out of something, good luck.)

I gotta pressure people to get things done and seen and approved because we are under a time constraint; I don’t want Nat to destabilize by living at home for too long because his group home is not ready. We have to conduct interviews with whatever resumes come in and hope we’ve made the right choice.  Hope to God that CORI and reference checks and Google and Lexus Nexus are all we need. Hope our gut instincts are right. Because who pays for it if we are wrong, God forbid???

But still, I think it is better to do all this than trusting Nat to utter strangers in a strange land.

Yay! For all of you paper people, you can order my print version of Dirt: A Story About Gardening, Mothering, and Other Messy Business (Stellated, Oct. 2011) here right now!

So just click here to buy Dirt conveniently.

Amazon will have it in 5-7 days. (November 7th, let’s say.)

Yay! Please tell me how you like it!

Most of my readers know that my family is all about the cake for celebrating. We make our own most of the time, but for large gatherings we like to special order and design a unique one from Party Favors in Brookline, MA. If you can draw it, they can bake it.  Three dimensional, I’m talking.

Nat’s graduation party is going to be big:  50+ people I estimate, so I am going with the Party Favors cake. Nat loves those, because they use real butter-and-sugar frosting to shape things– not fondant, that strange rubbery crap that they use on all the cake tv shows which to my mind is totally cheating. Well, sometimes they use fondant but not for my cakes.  Sure, fondant’s edible, but it is just too polished, too Martha. Maybe for a wedding cake. But not for my Natty.

I need ideas for the cake shape. First and foremost, the cake shape has to be something recognizable to Nat, and meaningful to him. Nothing symbolic. So I am going to list what Nat likes and what is momentous in his life, and I am asking you to chime in with ideas because I have not hit it right yet.

1) Disney videos

2) Swimming

3) Beach

4) Basketball

5) Social group

6) Food

7) Rides

What is momentous currently:

1) Graduation

2) Moving out of The House and back home for a bit

3) New apartment and group home of two other guys

4) Day Program

5) Graduation from school

6) Birthday

D’oh! These seem so not-there in terms of a cake idea…

I often feel troubled by not understanding Nat and his state of mind.  I do not believe in my heart that what you see is what you get. I wish I could. People say, “If he doesn’t seem unhappy, he’s not.” Yes, but no. Sometimes I am not satisfied with that. So here is what I want to ask him:

1) Do you understand what I say when I speak normally?

2) If so, do you feel bad when I adapt what I’m saying to a simpler language?

3) Do you know that I respect you, no matter how I talk to you?

4) Are you lonely?

5) Do you feel left out when everyone around you is talking? Or maybe you’re used to it by now?

6) Do you understand why we are planning your life without really asking you how you feel about it?

7) Do you wish that you and Ben were close?

8) Do you feel Max reaching out in his quiet wispy way?

9) What do you want for your birthday?

10) Have you ever been abused?

And so today I had a bad moment on my bike ride, a real heart bruise, when I thought of these, and I wanted you to let me know, somehow. But I know you can’t, and so I have to live with that.

The concept of “enough” is one that I am going to learn about my entire life, I guess. This being October, the month of my birthday and Halloween, I have had many opportunities to consider why some things in life, to me, are never enough.

All year I usually try to eat as few carbs as possible–I mean no bread, no sugar, no pasta, no rice, no potatoes.  I do okay with that, but every so often I am around chocolate, and then: GORGE. Tonight, after a day of very low affect, lo carb, shvakh eating, my eye fell upon that beautiful brown bag of Fun Size M&Ms for tomorrow night. My discipline dropped and I reached for the bag, saying out loud, “It’s tomorrow already.” I could not wait. There was nothing that would have held me back. I took one, tore open the pack, picked out a few of the bright colored discs, and popped them down, like vitamins. I hardly even tasted them. I had finished the bag before I knew it.

So I had another bag, this time slower. That was a little better. Soon I knew what I should have already known: I was on a binge. I ripped open the tiny Reeses. And the tiny Milky Ways. There I found some of the deep chocolate mouth I was looking for. Why hadn’t the M&Ms worked? And then, once the Milky Ways were swallowed and swimming down my guts, I felt bereft once more.

Then Ned and I sat down and skyped with Max. Staring at that long elegant face all I could feel was, “I want more.” I wanted Max here, I wanted to kiss him, cook for him, ride bikes with him, help him with some problem, experience his whole Maxie way. What do I mean, exactly? The skyping was good but not enough. I felt like I was playing a role, starring as Mom in the Skype movie, but not really having time with Max.

And so I went and got more mini Milky Ways. And then they were gone. Just now I told Ned about my empty chocolate feeling. “There is no way for it to be enough, ” I said. He nodded, understanding immediately. “You just need to keep eating it to get that chocolate moment in your mouth, but then it is gone and all you can do is keep eating it until you’re sick of it. You have to be sick in order to stop.”

As Max taught me, from one  of his favorite video games, Portal, “The cake is a lie.”

So I am wondering what is that? It seems like a cliche to say I am a chocolate addict, a stupid weak joke, but it is kind of that. But am I other kinds of addicts too? Like relationships? Where I need a certain kind of deep intense experience or it is not satisfying?

I think I live my entire life that way, diving down for the richest of whatever it is I’m doing, and that takes a lot of oxygen. I have noticed that for months now I don’t want to make dinner. With just the three of us most of the time, it feels like a huge waste of energy to cook some Entree and divide into three and then have the leftovers forever. A big production. My refrain at 7pm for months to Ned’s question of, “What’s for dinner?” is “I hate making dinner!”

Last week I said that to Ned during the day when I had just made him a sandwich for lunch. He was so grateful for the sandwich, thanking me and stuff, that I said, “Sweetie, I love making you guys lunch.  I love making you breakfast, too. It’s just dinner that I hate.”  Because dinner is too big, too much!

And he said, “So just make lunch for dinner.”  And that’s what I’ve been doing. Just eggs and a little salad. Or tuna and a bagel and an apple and peanut butter. Lunch for dinner. Not a whole big production. But just enough.

These days it seems like Ned, Nat, and I are all running at a higher speed than usual. Nat has been buzzing around, as alert as a deer in hunting season. His interest lately is to make sure that all things that are supposed to happen, do happen. It’s no mystery why Nat has had his alertness in overdrive; he must be thinking about the future. His whole world is going to change on November 11, and he knows it.

While all of us — teachers, House staff, family — have been talking to Nat about graduation, moving back home, and day program, he must be anxious to know what those changes will actually feel like. I understand this; I tell myself that Nat has lived at home on weekends and vacations, and that his day program has the same hours as school. But the fact is, all of the reference points will be new.

In all my years of knowing Nat, one pervasive, unchanging truth is that Nat needs his reference points in order to feel comfortable. I know how to give those to him, because I am the same way. I remember when I was in grad school, getting a Master’s in history, and how we studied historiography — rather than history itself. I learned that there actually was no discipline known as “history;” but that in fact all history was simply a record of an event told from someone’s distinct and unique point of view. An event’s makeup depended upon the speaker, his gender, his social class, his age, etc. It was perhaps the first time that I actually was able to articulate what I had sensed all along throughout my life: that we understand things only in terms of other things. And that to start at The Beginning of something is the hardest task for anyone to tackle, because you have to acquire facts as well as structure all at the same time so that you can best understand it. But what are the components of the structure? Isn’t the structure of something based on facts? How in hell does it all work? As Ned’s mom Eleanor said about the boys when they were babies, marveling at some commonplace thing: “No matter where you start, they don’t know it.”

So Nat’s earliest life — like all of ours — must have been a real trippy blur of stuff just kind of happening with no real rhyme or reason. How do humans begin to make sense of their environment? I have not studied much psychology but I find that question fascinating, because clearly it does happen. I would be willing to bet that every single human being alive today has developed some understanding over time, and then built upon that.  Fact upon fact — the awareness of things, the names of things, the functions of things, the importance of these things — is a tiny spark of information that must make itself known to us, and then we must learn their significance, and then we connect them together.

So if you have an impairment where maybe you have too many sparks at once, and too few threads available to connect, how the F do you do it? How did Nat make sense of this world? I can remember a few moments where I understood that he had made a connection, but there have been so many other moments, naturally, because he currently understands so much. The very first moment of awareness I witnessed in Nat was when he first laughed. I remember Ned and I were lying on the couch with him and Ned held him up on so that Nat was looking down at us a little. And Nat said, “Heh-L-L,” smiling. Then he looked at us some more and said, “Heh-L-heh-L-heh-L-hehL,” stringing together the sound with a smile.

Hey, was that –? I think that was laughter! I said. Baby Nat had laughed! What a delight that was for us, to see this comprehension unfold right before our eyes. That was the first time I became aware of the process of learning. Since then, there have been countless other such evolutions with Nat. Grasping the concept of school-following instructions-Pooping in the toilet. Being read to-fun-Reading himself. Vacations-Sleeping somewhere else. Parties have food-learning party behavior so he could stay at parties. Sports-Friends-Social Activities without an aide-Sleepaway at Special Olympics-Camp-Sleeping somewhere else without us-Residential School. Schoolwork-Vocational work.  So many concepts led to other, new concepts and experiences.

So now we have this new piece for us. Nat understanding that school is ending. How do we help that feel okay? A party. A cake. Nat understanding that he will move out of The House and come back home for a while. How does he understand that? Max graduated, had a party, lived at home before he went off to college. College as Day Program, Day Program as College. Moving to his own apartment in the Winter. His apartment will be near his home, he will see us a lot.

The new facts are going to be very different, but the structures are there. We are not starting from Day One, we are starting from Year 22. And so no matter where he starts now, he does know it.

I have sent out quite a few invitations to Nat’s graduation on November 11 (which originally was his due date!). Today Nat got a package in the mail, containing two beautiful pens and this letter:

It was signed with her name, Nyemade. When I asked if he remembered her, he said, “Yes.” I hope so. And I hope he knows how many lives he has touched.

When you think about it, being a successful autism parent is an incredible feat. There are so many difficulties you have to rise above. There are traumas you have to push through. There is the courage of advocacy that you have to create out of thin air. Many of us have to become new people; I know that I did.  It is as if we are reincarnated, reborn with these children of ours.

Perhaps my strength was always there.  Indeed, my parents and sister would attest that I have always been strong. But the strength I had in my childhood through my twenties was a kind of vivacious boldness, not the courage that comes from standing on bottomless fear and uncertainty. When I became Nat’s mom at 27, I was a bit of an amoeba, a tiny speck of an adult, just as unformed and little as he was. In some ways, it is as if Nat and I grew up together.

We all grow up with our babies, though. And we move along and develop beyond the grief and bewilderment that comes with the earliest years, the diagnosis days. So many parents I have met along the way, in my nineteen years of post-diagnosis three-year-old Nat, my six years of blogging and my fourteen years of writing articles, have come and gone. This is because they have been able to move on and adapt to the autism; they have found their peace or else they have figured enough out not to need to talk to me through the blog or email anymore. This is the way it works; we push through the difficulties and get to new places, new phases, new lives.

Some of us forget trauma more quickly than others. I seem to take forever. Lately, for example, I have been going through a struggle with my mountain bike, in that the chain slips so that it feels like it is going out of gear. I get shaken out of my Zen, my meditative state, when this happens.  I count on biking to get me to that zoned-out frame of mind where my thoughts are benign, going round and round like the tires.  This merging with the exercise and the moment gives me, similar to my bellydancing, a happiness and a high that I’ve otherwise never experienced — and believe me, I did inhale once upon a time.  Nothing comes close to being on the edge of physical exertion and then having the difficulty recede, and you go flying.  So when that chain slips, *thunk*, it is like a splash of cold water in my sunwarmed face.

(I have taken the bike into my shop four or five times, and each time they have reassured me it is fixed. My bike is old, so I don’t feel that I have much of a pedal to stand on, as it were, in terms of complaining. But I did complain, at long last, and eventually they replaced my derailleur free of charge.)

But I keep having dreams that my chain is slipping. I now have a stick in my muddy subconsciousness that stands out, getting in the way of the flow and even threatening to poke me in the eye. I can’t simply ride and be high anymore.  As ridiculous as this may seem to some of you non-bikers, I have been traumatized by that slippage. It takes more effort now to find that bliss. But maybe then once I’m there, it is stronger.  That stupid thunk is not going to stop me. And more and more, I can suspend my fear and just fly again.

I may have learned that perseverance from mothering Nat. His exquisiteness, the high of getting it right with him, is the prize, is why I do it the way I do. But as with the biking, I will always have a layer of consciousness to my being with Nat, a small sharp flash of the knife blade, the fear that something will fall apart that I cannot handle. I push myself to do things with him, to build a callus, to pile mattresses over this tiny pea, but I still feel it.

With Nat about to come home to live, for possibly 6 weeks, once school ends for him on November 11, I am faced with this issue once again. I think back to the one time — the one time! — I have ever felt simply one with the moment while being with Nat, and that was last year when I went alone with him to Disney world. I forgot myself there. Nat was an excellent Disney companion, because he liked what I liked (scary rides and junk food). We were the same, he and I. We were in some ways just like when he was born, two beings trying to figure it all out. But at Disney we were the same in that we wanted the same exact thing: fun. That time I pushed through the hard stuff and found myself aloft, probably right when the Splash Mountain raft got to the summit and was poised to crash downward. Within that screamy high moment, I found the Zen of parenting Nat, in that I was actually just like him.

Nat’s bright light is a little quiet today. My theory is that he is beginning to grapple with large, scary concepts–in particular, graduating school. He is watchful of me, more than usual, he is not smiling much, and he’s sucking his thumb a lot. The only place he became animated was the doctor’s office; but that’s probably because it is such a familiar place and it is pretty much always the same routine. Plus he knows he is loved there; his pediatrician is so proud of him–it’s freakin’ adorable.  (Yes, I know, I have to switch him to an adult GI but we love our doctor R so much!!!) Every time he answers a question of hers, she looks at me with almost tears in her eyes. She did not get the memo that he has been answering for quite some time, or maybe for her it’s just a thrill that doesn’t go away. Well, good. I want as many people as possible to care about Nat and to learn from him, that his autism is not a death sentence nor a disease nor a waste of a life. He’s a darling, and you know what I mean because if you’re reading this, you’ve probably got one, too. (Get up right now from your computer and give him/her a kiss, and then come back and finish this post.)

So anyway, I think that Nat is wondering a lot about what it will be like for him to come to the end of school. And whenever he gets anxious, he watches me — and Ned — a lot. I noticed that he came in and sat down right next to me when it was 6:15pm. The heaviness of his presence told me that he was waiting. Oh, right, dinner.

I got out some of the stuff, muttering to myself, because I had wanted to order pizza, but Ned pleaded for the leftover macaroni.

“Ma-roni,” Nat said, sticking close by me, peering into the fridge with me.

“Yes, Nat, I’m getting it.” I reached in and winced as the heavy blue Creuset nearly snapped my arm off at its tendonitis-ed elbow. Now I was getting annoyed, because of the pain and because he was breathing down my neck.

“Salad,” he then said, not content that I had just put my hand on it. “Salad. Ma-roni.”

“Nat, I’m getting it,” I said, “Stop repeating it.”

He backed off momentarily while I laid everything out on the counter: box of salad, pot of macaroni, plates– “Dressing,” he said tentatively. He knew he was being a pest but he just couldn’t stop himself!

“Get the napkins, okay?” I said, trying to get rid of him for a minute. He went off to get stuff and then I saw out of the corner of my eye a pile of yellow, blue, and white cloth: all the napkins from the entire week, and two dishtowels, on the table. Okay, at least they’re out and he’s not bugging me, I thought, or something like that. He started folding the napkins in his odd way: long vertical strips folded the way you do towels on a rack. Even atypical folding!

So he started again with the prompting. Prompting! I thought. “Hey Ned,” I said to my husband who had just emerged from his cave — er, office — on the third floor. “You know, I think that Nat’s repeating is actually prompting!” Ned looked at me, listening to this, my latest Theory of Nat. “All that training at school, everything is a prompt: ‘Nat: Napkin. Fork.’ Then fade back, then just give him an expectant look. Well that’s just what he’s doing: ‘Ma-roni. Salad.’ He’s prompting me to make dinner, step-by-step. And then when I do it and I also tell him to quit telling me what to do — then he fades back and watches me: expectant look!”

Ned just laughed. But he was thinking about it. And it did make a kind of sense. Someone who is so concerned with routines — especially these days, with this huge mysterious change looming over his head — would want to make sure that everyone around him is part of the program. He has mastered the art of being a nudge; he has surpassed even his teachers and his parents at that!

Seriously though. He knows how to do things — and now he knows how to get others to do things. I’d say he’s ready to be an adult.

What can we do about the depression we get when we have to contemplate our special needs child’s adulthood? I was trying to get at why there is so much grief, so much more than when a typically developing child grows up. I am not completely sure why the deeper pain in the former case, but I believe that it has something to do with both the fear of who will take care of him as well as the feeling that something is over.

It’s easy to understand that more obvious fear, the questions “What will happen when he’s an adult?  Who will take care of him when I no longer can?” In some ways, this question is easier for us to deal with because we can do what I did: throw ourselves into the planning and the research, and so control the fear with action and activity.

I’ve written a lot about the kind of planning, problems, and discoveries I’ve made so far in my quest for Nat’s group home and adult care set-up. I don’t think I’ve written much, however, about the underlying issue of the other issue of amorphous grief. But yesterday, when that Allman Brothers’ song “Melissa” came on, I found that the tears were about to break through. You’d think I would have clicked forward to the next song, but being me I made myself stay with it and try to figure some things out.

I was thinking about Nat’s impending graduation, November 11, and what it would be like. I saw him standing there in front of all those people – should be quite a crowd because twenty people are coming whom I’ve invited, and then there’s the school personnel and students. Nat’s teacher thought that a lot of teachers would want to go because Nat has been there so long and because, well, this is Nat we’re talking about and he is a very special person; the beauty of his face when he smiles just fills you up.

Ned says it will be a very emotional day. I’ve been focusing on the cake. This is more of the same as I mentioned above, I focus on the part I can control. But the moment is coming, oh yes it is.

I’ll be emotional because it is the end of something huge, Nat’s boyhood, Nat’s days as a student. The protective bubble of school routines, popped. But my planning about the future has made it so that at least I have a good picture of where he’ll be living, and what he’ll do with his days. So I highly recommend taking on some piece of the planning and research, every time you start to get the shakes about the future, because it helps refocus your mind. You can work on what will be.

As for the grief that remains, well, it may be about what was not. Maybe 22 is partly about facing what didn’t happen. He never did catch up to his typically developing peers. He never did learn about the Constitution, multiplication, etc. He is not going to college. He is not.

But then I see him in my mind’s eye, wearing the cap and gown, shaking his teacher’s hand, and grinning his face off, and I learn, for the millionth time, that he is.

Just heard from a Facebook Friend that she is really bumming out over the Transition to Adulthood thing. Suddenly Post 22 is in the press; suddenly so many I know are thinking, “Uh, oh, what will happen when he/she grows up and school is over?

I have been there — I am there!  And I don’t have the answer. All I can do is talk about what I’ve learned so far. The biggest, most important thing for any autism parent to think about with Autism Adulthood Planning is: Your Community!  You go back in time, to the very people who helped you in the first place: other parents.

It is the other parents who will connect with you both emotionally and pragmatically.  You and the other parents have similar children, and now it is time to figure out just how similar they are.  The thing to do Pre-22 is to get really social really fast with the Autism Community and make a match with another family.  Here are some of things I’ve learned in this process of Transition to 22 for Nat:

1) Attend workshops to learn about the programs and funding sources, but just as important:  try to meet some people there. Get business cards printed, so you can give parents you like your contact info. Get their number and email. Start a file: Autism Parents I Like.  Whatever.

2) Write up a brief list of what is important for your young adult, or what he/she says is important. I am thinking only of the first five years in terms of living goals. Don’t take on more than 5 years at a time.  Think carefully about your adult child and imagine him at his happiest. Where is he? What is he doing? Who is he with? This is how your vision for his housing begins.

Write up your list with stuff like:

• Kind of neighborhood he does best in
• Kind of activities he enjoys
• Need for public transportation? If he does well on public transportation, maybe you want him to live near a bus or subway or train so that, with assistance (or without) he can travel cheaply to other places, without needing a car or a van!  Think about zipcar, or one of those rental agencies so that you don’t have own a vehicle for this purpose.
• What are his issues and challenges? How do you handle them?
• How much money are you, the family, able to contribute monthly to his care?
• Can he share a kitchen and bathroom?
• What is the largest ratio of staff to roommates your guy can handle? Nat is probably okay with 1:4.
• Can he be left alone at all? This is a dividing line.  Being able to be alone opens more doors in terms of living situations.
• Who are his friends, and can any of them live with him?

3) Once you have your list, you can copy it and hand it out to prospective “suitors” or roommates.

4) Follow up with the families you like, and have a potluck dinner to get to know each other better.  Find out if you are compatible, and if your children are. Are they too bossy?  Are you? This is important to acknowledge before you partner up.

It began with support groups.  They saved you, right?  They are the ones who always get it. They love your kid and you love theirs.  It only stands to reason that when we all get older, they will be the ones we turn to again. Cultivate your peeps now!

We are now recruiting for Nat’s one-on-one.  Here is our ad:

One-on-one staff person sought for autistic young man in Brookline, MA.
His autism is fairly severe, but he is somewhat verbal and has a very
friendly, sunny way about him. He loves going out everywhere, to
events, movies, gatherings, dinner, bowling, and on hikes, runs, and
bike rides.  He is 22 and very independent in terms of self-care; he
is very fit and fun-loving. This staff person must be able to work on
social skills, travel training, appropriate behaviors, leisure skills
and communication. He or she would also need an understanding of the
young man’s moods and dislikes and routines to keep him happy,
productive and calm.  The majority of the time the young man is ready,
willing and able to work, play, and go.

Here are the hours we were thinking of:
2 hours Tuesdays and Thursdays to get the client to his day program, 7:30-8:30 (this is optional)
15 hours M-F ~4-7:00 which would involve the following with client:
– Household chores
– Dinner prep
– Exercise: pool,(after 5) bike, running
– Library visits:  Newton or Brookline
– Food shopping
– Laundry
– Dusting and vacuuming
– Leisure skills, such as gaming
– Practicing emailing and phone use
– Travel training on T and on foot
WEEKENDS VERY FLEXIBLE
4 hours Saturday night 5-9
3 hours Saturday afternoon, 12 – 3 social and exercise
3 hours Sunday afternoon, 12 – 3 social and exercise
3 hours Sunday morning 9-12 social outing

Contact Sue Nathan, snathan@advocatesinc.org, 508-628-6408

Today was my birthday.

It was also my novel’s birthday! Dirt: A Story About Gardening, Mothering, and Other Messy Business, was published today, on e-book.

Click here for the Amazon link.

Or

Click here for the B&N link.

•••Even if you don’t have an e-reader, Kindle has a free app for your pc on the Amazon site.

•••And for your mac!

Book Jacket description:

Emmy is a typical suburban mother—at least on the outside. On the inside she’s a mess. She’s trying to raise her three sons alone, and that is proving to be a discouraging struggle. Her oldest, Nick, is profoundly autistic and increasingly frustrated with the world around him. Henry, her normally dependable middle child seems to be drifting away from her into morose adolescence. And then there’s Dan, her eight-year-old who seems perpetually angry at everyone in his family.

Emmy’s estranged husband Eric is no help at all, just a weekend dad who pops in when he’s not wanted and takes the boys out for fast food or visits to the Science Museum.  Emmy’s haven from it all is her garden, and her dream is to start a landscape design business. But lack of time and energy keep her stuck selling real estate; it is all Emmy can do just to keep her life under control.

When a flirtation, a brush with the law and a near tragedy occur within a few weeks of each other, Emmy is certain that she has failed adulthood completely. Dirt presents a portrait of complicated relationships and the ways that people find refuge—and each other.

Susan Senator is the author of two acclaimed books on autism and family life. Dirt is her first work of fiction.

And

A Word To My Readers:

In writing this novel, I aimed to create a family of five equally important characters. I drew upon the voices of my three sons, Nat, Max, and Ben to get at the personalities of the brothers Nick, Henry, and Dan. Emmy and Eric, the parents and the other two main characters are drawn from bits and parts of people I know and people I imagine. What happens with them is fiction, although some of the conversations between Emmy and her sons are close to reality.

I was especially challenged by creating Nick, Emmy’s oldest son who has severe autism and is barely verbal. Nick is based on my Nat but is not Nat any more than Emmy is me. The great thing about fiction is that it allows one to bend reality and truth to suit an author’s vision. And so I envisioned Nick as almost a counterpart to Christopher, the protagonist in Mark Haddon’s The Curious Incident of the Dog in the Night-Time, but representing the other end of the Autism Spectrum. I wanted Nick to be just as whole a person as Christopher, equally complex and likable, and to come alive as a real person with thoughts and emotions—a whole inner life. I don’t believe there are many novels out there with a main character from the extreme end of the Spectrum. And if a severe autistic is included at all in a story, he is usually portrayed as a savant, mystery detective  or oracle of some sort. Nick, on the other hand, is just a teen with severe autism, lovely, flawed, and human.

But the story is not just Nick. This is not an Autism Novel, although autism provides much of the salt in its flavoring. The intersection of the five people is the story, along with a few outside catalysts: Dan and Henry dealing in their own ways about their father moving out; Emmy feeling stagnated by her job and life; Eric not knowing how to connect with his family anymore. I wanted this story to convey truth, a real glimpse of a family struggling not only with autism, but also divorce, sibling rivalry, loneliness, and dissatisfaction with life.

Just as in my two other books, you won’t find a cure for autism here or miraculous transformation of a character’s flaws. But you will find honest growth and the bumpy but wonderful reality of family love.

So click, buy, download, enjoy Dirt — and then review it!  On Amazon, B&N, your blog, twitter, wherever you feel like! Thank you!

This piece ran in today’s Jewish Advocate.  It is an edited version on the recent blog post “The Right To Struggle.”

Parenting
Susan Senator
A s I lay in bed last night, my remaining thoughts were about my autistic son Nat. I was thinking about his imminent graduation and wondering how he would feel once he learns of it. This subject has weighed heavily on my mind because the idea of revealing this news scares me. Traditionally, Nat becomes seriously anxious in the weeks leading up to a major event, and this one – no more school – is perhaps the biggest he’s ever faced. Or at least it is right up there with moving into the school residence.

Nat’s anticipation of many events has always set him off. Whether for a beloved vacation, like going to Cape Cod, or an unfamiliar new experience, like going to sleep-away camp, we have often seen an increase in his nervousness. His responses range from fast stomping around the house to repeating questions nonstop about the streetlights or other people’s breakfast choices to jumping up and down, screaming and biting his own arm. But I guess in some ways that is no less self-destructive than when I gorge on ice cream until I’m sick, during my periods of deep depression, or go to bed in the middle of the day, or blow off a hundred commitments to people.

Still, we have become very careful about how and when to bring up changes and transitions. I do not want to have to go back to times of fearing Nat – I used to refer to such times as being under siege. Nat’s aggressive and anxious periods used to keep us prisoners in our home, always fearing the next outburst. I remember my youngest, Ben, hiding under a table from Nat. I never want to see such fear in my children again; nor do I want a child of mine to feel so out-of-control, as Nat must feel during those times.

But just yesterday I was talking to M, a new friend, the mother of one of Nat’s (I hope) future roommates. “We’ve definitely seen some regression in J since we’ve told him he’s going to be moving out, an increase in some really challenging behaviors in J,” M said, and she described some of what she’d been seeing: shredded paper, self-stimulatory speech. I thought to myself, Yeah, Nat will do the very same thing, once we tell him. I have been figuring we would tell him after we have had a meeting with the entire transition team, on the 12th, when we will plan Nat’s final month of school. I have been waiting for the staff to tell me what they usually do and say to students when graduation is upon them. But lying in my dark bedroom, I thought of J and his many, many questions, and the stress that J’s family all must be feelng, simply because now J knows. And suddenly I thought: Doesn’t Nat deserve to know, too? Doesn’t he deserve to have time to get used to the idea? Even – and this is strange, but I feel it is important somehow – the right to get really anxious about it? I’ve been wanting to tell him about what I’ve been preparing for him: the day program, the roommates, the apartment – but no one has given me the go ahead. I’ve been waiting for A Sign.

However innocent and sweet Nat appears – and in fact is – he is also a man of 21 and very astute. For a person with limited language, he has compensated with becoming very sensitive to our nuanced voices, whispers, mood shifts and even the way we speak in code around him. We refer to Nat as “Eldest” when we need to discuss him in front of him. But somehow I don’t think he is fooled. Just the other day while we were all in the car together, I was starting to say something about his social group; but I did not even say the words “social group”; I wasn’t speaking to Nat, either. I merely said, “I wonder if those guys are going to the –” I didn’t even finish my thought. I was wondering if those social group guys were going to the Topsfield Fair. (Nat was not going with them; I felt afraid that he would wander from the group there. I would be sending him with a different group that had more experienced chaperones.)

Nat froze. Oh, boy, was he listening. He was listening with every fiber of his being, every neuron was reaching its tangled ganglia toward me, eking out meaning from the very molecules in the words coming out of my mouth. I saw him in the rear-view mirror, his wide, tilted blue eyes filled with questions, just like when he was a baby looking up at me from that back seat. (If you looked at the eyes and blond bangs, and blocked out the lower face with the beard stubble and man’s jaw, it was the same exact face.) And I saw that he was still so dependent on me for information; he hangs on what I say because I have introduced him to much of the world. Not only that, I am the one who figured out, so long ago, how to explain things to him to reduce his anxiety. As his mom, I had to major in Natology, and get an A every time, or he would be scared or sad. It has been my job to prevent that.

Or so I’ve thought. Last night I couldn’t sleep because I realized that no, it is not my job to prevent that. Protect him, yes; but my job is also to give him the skills and experience to protect himself. The whole reason you have school and then independence is so that your babies can eventually survive – on their own, to whatever degree possible. Because you won’t be there forever. But also because it is their right, their right to live an entire life. J was struggling, but he was learning and growing, and his mom was there to support and explain. But J was doing what he needed to do. Shouldn’t Nat have that same opportunity?

So I couldn’t stand it any longer. Today, driving him back to The House (the school residence), Ned and I were talking – in code – about the graduation and party. Suddenly I blurted, “You know, Nat, you will be leaving school soon. Right around your birthday.”

“Yes,” Nat said, snapping to attention, listening in that deeply neuro-aware way.

“So, in November, you won’t have school anymore. You’ll graduate. We’ll have a party. And you’ll come home to live.” I stopped there, because that was all I have for now. As soon as the home and roommates are completely certain, as soon as I have a building to show him, I will tell him about that move-out. For now, it was the leaving-school concept that I felt he had to hear about, at last.

“And Nat, we’ll talk about it a lot more, OK? So it’s not happening yet, but in November, OK?”

“OK.”

There was that face in the mirror again, so vulnerable, so young. But in a few moments, he went right back to his quiet self-talking. So darling, so innocent! And yet also, so ready.

Susan Senator is the author “The Autism Mom’s Survival Guide” and “Making Peace with Autism.” Her Web site is susansenator.com.

We are now recruiting candidates for the Shared Living Provider (live-in caregiver) for Nat’s group home.  Here is the description:

CARING AND COMMITTED CAREGIVER SOUGHT

Advocates, Inc. is looking for a full-time live-in caregiver (Shared Living Provider) to support three young men with moderate autism in a large apartment in Brookline, MA.  The potential caregiver will live rent-free and will provide daily care and an enriching, safe and supportive environment for the three clients.

POSITION OFFERED:

Overseen by Advocates clinical team, the full-time SHARED LIVING PROVIDER (LIVE-IN CAREGIVER) will provide support for the three young men in the apartment.  Advocates, Inc. Shared Living Program’s clinical team will assist the Shared Living Provider with setting up the home’s routines implementing procedures.   There will also be occasional help from all the families. Two of the young men also have some additional part-time DDS staff to work with them on a semi-regular basis.

DESCRIPTION OF THE THREE YOUNG MEN:

The young men are in their early twenties, and can communicate either verbally or with some prompts and cues. They have many things in common; they are into sports to different degrees (walking, bowling, skiing, running, biking).  They love going out into the world. Each of the young men is delightful in his own way, very capable of many aspects of self-care, and socially willing. Each requires help in social appropriateness, self-calming, and choosing leisure activities, as well as prompts and some physical support in meal prep, cleaning, and some activities of daily living (ADLs).  The job would call for skills that encourage and facilitate social interactions.

SCHEDULE AND TYPE OF ACTIVITIES:

The individuals are out of the house attending day programs Monday through Friday from 8am to 3pm.  They are very involved with their natural family members including their parents, sisters, brothers and other close relatives.  The young men participate in many activities outside the home, always accompanied by a staff person or the caregiver.  They enjoy going out in the community.  With the proper oversight and supervision, these young men enjoy taking the T places, taking walks, shooting baskets, visiting stores, going out for ice cream, sporting events, shows, movies, bowling, and many other activities offered in the Greater Boston area.

LIVING ARRANGEMENT/INVOLVEMENT WITH FAMILIES OF THE YOUNG MEN:

The preferred living arrangement is one in which the families will be actively involved with the home: visiting the young men, taking them home once in a while, making dinners with them.  Such active family involvement means that the caregiver and other support staff will need to communicate with the  families on a regular basis.  The young men’s families would want them to live in a safe environment, where they are encouraged to continue to grow with their own personal hobbies, interests, and skills in all areas of life (social, physical fitness, self care, etc.).

POTENTIAL QUALIFICATIONS OF SHARED LIVING PROVIDER

• Caregiver can be either female or male, or a couple
• Caregiver should be active, attentive to details, enthusiastic, able to think on his feet and respond quickly and effectively.
• Able to offer assistance with ADLs:  showering, shaving, tooth-brushing, monitoring with toileting, some assistance with dressing
• Medication management
• Provide companionship tailored to each of the three young men’s individual personalities
• Transport and assist individuals to occasional appointments (families will do most of this)
• Facilitate family visits and communication on an ongoing basis to ensure the young men’s optimum care and well being
• Knowledge of Autism/ MR.  Training will also be provided.
• More residential setting details  andstipend details  available upon request.

Compensation:

Generous tax-free stipend will be paid on a monthly basis to Shared Living Provider as well as Room and Board.

If you or anyone you know is interested; or have additional questions, please contact via email or the number listed below:

Susan Nathan

Human Resources Recruitment Manager

One Clarks Hill Framingham, Ma. 01702

office 508 628-6408

blackberry 774 279-0419

snathan@advocatesinc.org

…coming soon, mid-November.  I will print some excerpts next time.  Not available to order yet, I’ll let you know!

I am not a Control Freak, any more than any other autism mom is; or perhaps what I should say is that Control Freak is the baseline for autism parent. We add on our levels from there. We start out in shock, as the diagnosis is acquired and sinks in. In fact, here is my rendition of The Levels of Autism Coping:

1) Suspicions But No Evidence (also comes in the form of Doctor Disbelief). This level may be substituted for Noticing Something is Wrong, but both often result in Doctor Disbelief.

2) Diagnosis Shock

3) Depression and Withdrawal

4) Anger and Renewal of Energy

5) Learning and Becoming an Expert

6) Partnering With Parents and Families Like Yours

7) Exhaustion and Withdrawal

8) Questioning of Priorities

9) Balance — Somehow.

10) Acceptance and Calm Advocacy

11) Teenager Shock

Repeat 2-10

12) Transition Jitters

13) Panicky, Active Learning About Adulthood

14) Confusion About Adulthood

Repeat 4-11

15) Coming Up With A Plan

16) Networking With Parents and Families Like Yours

17) Anxiety About 15 & 16

18) Trying it Anyway: Developing an Autism Adulthood Routine

19) Watching and Waiting

20) ?

In other words, whatever comes up, you go through it and you figure out the next steps. You control it as much as you can so that it doesn’t control you or your family. And by the way, the “It” I refer to is not your child, and it is not Autism.  The It that you must control is all the issues around autism, the baggage, the stuff that gets between you and your child.  Autism Mom Control Freaking is really just about trying to stay there with your child and take care of him. It’s just Motherhood on Steroids. It is Saber Tooth Tiger Momming.