Susan's Blog

Tuesday, November 29, 2011

This is his life

The last of the leaves have settled to the ground. Every time I ride it seems I happen upon a leaf dance, where a handful of them swirl around each other, their translucent yellow skin catching bits of fiery sunlight. It feels like a good autumn — now — because I, too, have settled into my new routine — of Nat living at home — and just today I had a little time to think about things.

I was sitting on a park bench in Boston Commons, having just finished teaching my Tuesday class. I was talking to my mother on my cell, while people walked by me snapping pictures of the State House and the impossible steepness of Beacon Hill. A guy was spearing trash and the pigeons were happy in the warm air; you should see them when they’re cold and unhappy, sitting so still and close to the ground, fat and round like potatoes. I was telling Mom the news, catching up from when I last saw her at Thanksgiving — we talk frequently.

I described Nat’s days and the problems we’ve been facing, mostly of getting used to working with a staff person. This guy is a competent, capable young man whose job it is to work with Nat from around 4 until 6:30 every day. Even before we hired him, Ned and I knew that this part of Nat’s day would likely be the hardest. For years Nat has been accustomed to being productive at his school residence, but completely relaxed and on his own at home. And now, after years of this routine, his days at home are now being structured.

“We’re having a lot of trouble coming up with things for Nat to do,” I told Mom.  And, as she always does, Mom swung into problem-solving mode: “Why don’t you have him do some of the food shopping, everyday. Don’t buy all that you need when you go food shopping; leave some for him.”

This was precisely what we had started doing for him, and I began to tell her that, when a thought popped into my head: this is his life.  Then I felt a strange lightening inside, a billowy softness that I tried to understand. I said to Mom, “See, the thing is, it’s not a matter of coming up with activities to keep him busy.  Not like what we used to do [or what the school and residence did], chaining one activity after another, teaching ‘leisure skills,’ and then ‘travel skills’ and then ‘computer skills,’ or ‘social skills’ in order to keep him structured and out of trouble.” (I did not say it like that, but those were the ideas that were forming.)  Suddenly what I wanted to think about was what is it that people do with their time after work? What do I do?

Nothing. Everything. Something. Just stuff to keep going, keep living, enjoying what I can.

My discovery took wing. I had images, clips dancing around my eyes, of necessary and frivolous errands; sometimes I go to CVS knowing I need batteries or Claritin but feeling happy once I’m there because I can browse the new makeup and buy a Diet Sunkist for the drive home. Or I put a load of laundry in and then go mail some stuff.  An hour goes by, the laundry’s done, I think about what I am missing for dinner.  And then there’s catching a movie, spur of the moment, going out to dinner, walking around Jamaica Pond. These are the things Nat can do. Just the mixture of purposeful and aimless that we all deal in after work.

These thoughts came to me like the deep breath you finally catch and pull into your lungs after a strenuous hill. That’s all I have to do, I realized. I have to think of Nat’s days in a slow, unfurling way. We’ll all have to see — Nat included — what his days have in store for him, how they will arrange themselves around the fact of the staff person. I have never thought of Nat’s life this way before, like something rolling out before him, to be created–and revealed–all at the same time.

Sunday, November 27, 2011

Book Me!

I am trying to get gigs for book groups, book talks and autism group talks.  Below is some of the publicity material for my latest book, my novel Dirt: A Story About Gardening, Mothering, and Other Messy Business.

Susan Senator is a writer, speaker, political activist, wife, and the mother of three boys, the oldest of whom is 22 and is severely autistic. Susan likes to say: “With autism, never say ‘never.’” She is the author of the Exceptional Parent Award-winning Making Peace With Autism:  One Family’s Story of Struggle, Discovery, and Unexpected Gifts, (Trumpeter, 2005), and The Autism Mom’s Survival Guide (For Dads, Too!):  Creating a Balanced and Happy Life While Raising a Child with Autism (Trumpeter, 2010)  Her new novel, Dirt: A Story About Gardening, Mothering, and Other Messy Business (Stellated Books, 2011) features a severely autistic young man as one of the main characters.

Susan has written articles and essays on disability, education, parenting, and living happily, in the New York Times, the Washington Post, Boston Globe, Exceptional Parent Magazine, Family Fun, and Education Week. Susan also teaches English at Suffolk University in Boston and is a popular blogger. Her writings took her to a state dinner at the White House in honor of Eunice Kennedy Shriver and the Special Olympics, in 2006. Susan is available for booktalks, conferences, and workshops. See

Here is what some have had to say about Dirt:

“Loved it top to bottom! Senator’s prose makes colors and emotions bloom like rare flowers on the page. A glimpse into the marriage garden, weeds and all, with a story that blossoms before you.”   —Kim Stagliano, author (with foreword by Jenny McCarthy) of All I Can Handle: I’m No Mother Teresa

Dirt is an honest and moving novel about very real people. Anyone whose own family isn’t perfect (and that’s all of us) will relate to the Grahams’ struggles to hold on to each other when so much threatens to pull them apart. Sometimes you can’t solve all your kids’ problems—sometimes you just have to love them. Senator understands this and she makes us understand it too.”           —Claire LaZebnik, author of Families and Other Nonreturnable Gifts

“Susan Senator’s novel, Dirt is as pleasurable as it is unforgettable. Through vivid characters and seamless prose, Dirt gets to the heart of family and the power of love to pull us through. Dirt is a book you will take with you long after you’ve devoured the last word.”    —Emily Miles Terry, New York Times Bestselling Author, Nesting: It’s a Chick Thing

“Senator gets it all right. The characters breathe, they are all likable, believable people struggling to do the best they can under enormous pressures. It’s a realistic novel: things don’t magically get better, problems don’t disappear, but what does crystallize is the parents’ intention to see each family member as the unique individual he is, and to honor that individuality and the specific needs and issues, rather than focusing on how those individuals revolve around Nick and his needs. One of the better books I’ve read that incorporates autism into its narrative and one I can wholeheartedly recommend.” —Kim Wombles, blogger, Autism Blogs Directory

Friday, November 25, 2011

Three Holiday Gift Possibilities…

So far, I have published two books having to do with autism:  Making Peace With Autism, and The Autism Mom’s Survival Guide.  and one novel that features a deeply autistic character:  Dirt, A Story About Gardening, Mothering, and Other Messy Business.  It is my very biased but honest belief that these books would make excellent holiday gifts. Making Peace is good for those beginning to come out of the haze of diagnosis, who are trying to regroup and reconfigure their family life with autism in the mix. The Survival Guide is good for those starting out, needing to figure out how they can still be whole people in their own right, how to have fun, how to look at this huge thing called autism.

Dirt is a novel, my latest book, and it is a story of a suburban family of five affected by autism as well as other issues — divorce, drug abuse, sibling rivalry, infidelity. The characters intersect intensely, including the highly autistic oldest son, Nick.  He is barely verbal but he is a full character in the book nevertheless.  Dirt is a fun and thought-provoking read and a good gift for anyone who like contemporary family novels. Good for gardeners and families alike!

Saturday, November 19, 2011

Use this post to write your Congressmen

Okay, now it is time for a little bit of politics. With the Supercommittee about to act — or not — either way they are taking action — it is time to weigh in with our senators and reps.  Here is how you email your own senators and reps. And here, below, is a template that you all may use. You may not believe it, but I know for a fact that senators and reps take these emails, letters, and phone calls to sessions and show the others what their constituents have told them!  Your letter will help. Just cut and paste mine and substitute your own stories.

Dear Senator Brown,
I am the mother of a 22 year old lovely but challenged young man with fairly severe autism. I have published several books helping parents who live with autism. But now that Nat is 22 and in the adult system, I see once again that we need so much help just to keep our families together. Autism is so complex.

One of our country’s blessings is our human services. Let’s take Medicaid as an example, because I have firsthand experience with that program.  As you know, here in Massachusetts, Medicaid funds DayHabs for many, including folks like my son. Though far from perfect, these DayHabs give support and therapies during the day for so many adults with developmental disabilities.  Without the DayHabs, which run usually 9-3 M-F, there would be nothing for these people. Nothing. With so many having been educated with our public school system (also far from perfect, but lightyears beyond what the disabled used to have — Nothing) isn’t it a profound waste of human potential to let these people just languish for the rest of their lives, doing nothing and living in their aging parents’ homes — and that’s only the lucky ones who have parents up to the task.  Autism sometimes comes with difficult behaviors (my own son, whom I love with all my heart, just this morning bit his own arm out of frustration with the world…)

I want to invite you to come with me to my son’s DayHab in Wellesley, Autism Services Association. There you will find one of the top-notch DayHabs, and yet you will also observe the shoestring budget they run on. There is no fat to trim. Not with level funding for all these years.

Senator Brown, Medicaid is not the place to experiment with deficit reduction. As unpleasant as it is, we all know that revenue to pay to run this country comes from taxes. Please look to the wealthiest in this country first, before looking at the poorest and most vulnerable. Medicaid helps the most vulnerable. Come with me and see for yourself. I will make time in my very full schedule if you will in yours. Please come; lunch is on me! –Susan Senator, [my address and phone number]

Wednesday, November 16, 2011

Sometimes you need a new paradigm

For a lot of today I was walking around feeling a little like my skin hurt–that’s how bad I felt about Nat’s situation. I called my Mom after I dropped him off this morning and I was barely coherent. I could not figure out why I felt so bad, and I was pausing a lot while talking to her. I know she was getting pretty worried.

So what was it that had set me off? I think it had something to do with our arrival this morning. We were waiting outside the building because we were early. Two clients, a young man and a young woman got out of a van and were so excited to see me. They had that look that many have in Nat’s circles: stained buck teeth, pimples, fat. But their faces lit up when they saw me — and they didn’t even know who I was. They asked who I was; they shook my hand. The young woman kept saying it was time to go in, but the staff person did not want her to come early. But he did let Nat and me in, which was odd. I told myself not to read into it. I went around smiling and shaking hands with clients and staff, and tried to remember names. I wanted to ask question after question: what does Nat do during the day? Are there forks and salt or does he have to bring it? What is he like there? Do people understand him?

I got some answers but I felt so many more questions filling me up, but it was too much and so nothing valuable came out. I kept hearing my thoughts:  this is so familiar, so familiar. Same phlegmy and raw stuff in my throat, dry pain behind my eyes, making my forehead wrinkle. It’s that deja vu of leaving Nat somewhere kind of drab; kind of ugly, leaving with a cloud of uncertainty. The thought Institution sucking out my soul like a Dementor. Like The House at school, like school itself. When back then what I thought I wanted was for him to just be with me, my boy in a bubble.

I think what I wanted, and what I’ve wanted all along was to fix Nat’s life. I see myself as a powerful, capable, bright person. Time and energy on my side, a beautiful husband at my side. Why can’t I create something better than this?

So those thoughts were taking bites out of my insides most of the day. Sometimes while I was riding they cleared away and I healed a little. The Beethoven helped. And the sweet, sweet creamy coffee. I also made myself grade a lot of papers, to make me feel like a Woman With A Purpose, rather than just a watery blob.

I dropped Ben at an appointment and sat in my car with more papers to grade but I didn’t. I cried a lot, so much that my tissues disintegrated. I let it evaporate and went to get Ben, grateful for the dark in the car so he wouldn’t see. In the house, I lay on the couch like a sloth and talked to Ned about what dinner should be. I’m not sure when it was in the conversation but at some point he said, “You know, Sue, that room they’re in? The whole thing; it’s a lot like social group, you know, at the Eliot Center? A lot of guys running around, a kind of dingy old room, some are chatting, Nat’s walking all over the place, and they’re maybe painting pumpkins. This is at least as good as that.”

Social group! Yes. Oh my God, yes.

Sometimes you’re just looking at something and not seeing it at all, like those optical illusion paintings, where first you see the vase in the center and then you look again and you see the two profiles on either side of it. Once you see that you can never not see it again. Here I’ve been telling Nat that DayProgram is work.  Or that it’s like school, kind of.  He tried calling it New School once, but that didn’t stick. That wasn’t it, and both he and I knew it. The thing is, it’s not school. It is much more like social group which we all know is Nat’s absolute favorite place to be.

With that new paradigm in place, I found the energy to get off the couch and start pulling out leftovers and salad.

Monday, November 14, 2011

It begins

Today didn’t go so well. Or maybe it did, depending on your perspective. My perspective right now is dark mud, so there you go. I am remembering my feelings of being under siege with Nat in my house, and I feel a wisp of that stinging me today. Not only that, there is also a profound sorrow that is pulling me down, despite telling myself to stop it already; despite knowing that we are the lucky ones.

My sorrow is the oldest kind, that of a mother whose child is disabled and limited. As I write this, my sorrow deepens and I even feel a little pinprick of fear/shame because I know that I am betraying people:  Nat, because I just said that bad thing; those who look to me for guidance, who thank me for forging a path where there is none, who learn from me. I’m betraying all of you because I feel these terrible things. I find myself wishing he didn’t live at home still. I find myself wishing he wasn’t autistic. I find myself terrified of his future, that here we are, here it is, and that in itself is scary.

As he walked into the DayHab today for his first day, I could feel his anxiety, his excitement, perhaps, his being at loose ends. He didn’t know what to do, where to sit. We were early, so they were not quite ready for him. He stood there, gangly in his down coat, like a big bumpy blue lollipop — it was already too warm for that — and carrying his school backpack that only had lunch in it. A lunch he’d made. I feel so proud of that and yet so sad, too, about every little thing…making lunch while supervised by his mom, at 22; not having the right coat on; feeling awkward and new and not knowing how to say that. Someone called his name:  “Nathaniel,” and he shouted, “Nathaniel!” As ready as a soldier, and perhaps just as nervous.

Or is that me?

Walking back to my car, feeling those stupid tears, wanting to talk to someone, opting first to talk to myself.  Is it okay? Seemed a little loose and unstructured… Better call Ned. Ned doesn’t pick up. Call my other friend/my guru, get his perspective. I felt better when we switched over to some State House gossip, the stuff that lights our fires.

Did a little food shopping and I carried an almost painful lump from my throat down to my upper belly. Caught sight of myself in the closed-circuit TVs in the aisles and saw a black and white me, bony-faced and serious.  I wanted a Starbux, but I had ice cream in the car so I went home. Way too hot even for my little jacket. And there’s no way that Nat will leave his coat behind when he goes out to the worksite. Zipped all the way up, too. Will someone notice and suggest he leave it? Probably not. This is the real world now, people can’t expect to give too much of a shit, even good people.

If I sit for a moment — which I hate — and identify the source of the pain, like a stupid masochist, I find that it is, of course, the same old tired, boring wound: that I don’t know what this new situation is like for Nat and I fear that he is unhappy. Also: that I can fix nothing, that he really is disabled. And that this is forever for him.

Ned picks up this time, “No, it is not forever,” he says.

“You don’t feel sad?” I ask him.

“No, I think he was happy there when he visited with his teachers last week. I think he’ll adjust.”

Why am I always the head case, and he’s the brave and reassuring one? This is the old pattern from the earliest diagnosis days. I feel alone even though Ned is so much with me, on my side. I find myself thinking, Am I going to have to go through another 6-month period of grieving, just like when he was three, just like when he moved out at 17? I don’t want to go through that. I don’t want to keep feeling this way. But it is back, and I have to go through it.

Sunday, November 13, 2011

Help Change the DDS Eligibility Policies

This was forwarded to me by a friend:

People with intellectual disabilities and autism, and their families.  We need your help.

Representative Dan Winslow is presenting a bill to the Senate November 15 at the State House, Room B2, at  10:30am.  This is a hearing for the bill, open to the public!

Following is an exerpt from an article written Fred Misilo, Jr. Attorney, of Fletcher Tilton, Attorneys at Law, who participated in a film that recently aired titled “Coming of Age”.  The film discusses the issues faced by parents of autistic children who have turned 22.

“… this documentary highlighted, in part, the irrationality and harshness of the DDS eligibility regulations. As most readers know, DDS uses a rigid bright line IQ cut off of 70 or below in making eligibility determinations. This regulatory practice is not consistent with nationally recognized professional standards. After becoming informed on this issue, Representative Dan Winslow filed a bill (H3527) entitled: An Act to Adopt a Definition of Intellectual Disability Consistent with the American Association of Intellectual and Developmental Disabilities.

A hearing on this bill is currently scheduled for November 15th, at 10:30 AM in Room B2 of the Statehouse. This bill would require DDS to adopt the AAIDD definition of intellectual disability. Since its inception in 1876, AAIDD has led the field of intellectual disability in understanding, defining, and classifying the construct that is currently referred to as intellectual disability. It has been my observation along with many others with whom I’ve spoken that the current DDS regulatory definition has had one sole purpose – to unduly restrict access to DDS adult service eligibility of individuals who meet the AAIDD definition of intellectual disability. Parenthetically, this shouldn’t be controversial. Massachusetts DDS formerly utilized this definition until it unwisely chose its current irrational, rigid and exclusionary definition. My hope is that Massachusetts will return to a social policy that embraces the best national practices in the intellectual disability field instead of running from them. Adopting H3527 will reflect a return to a rational eligibility policy based on the real needs of individuals and not on bureaucratically driven fiscal concerns.”

If you cannot attend the hearing, call your state senator and representative and ask them to support H3527. We must make changes to the current eligibility practices at the Department of Developmental Services (DDS)!

Nat loves his work

On Friday at Nat’s graduation, the biggest theme I heard from the speakers was about his work ethic. Nat’s very first day at Papa Gino’s was highly structured and a long time in preparation. His teachers feared that he would be anxious and they set the bar low. But Nat proved his own desire to be productive, and he completed his job in record time. The rest is history. Anyone who’s been reading this blog knows how Nat loves his work–any job he’s ever been given. Nat now has a resume with at least six different job experiences, all positive, as well as documentation of his ability to work several hours in a row with very few breaks.

But when we first were asked at an IEP to start thinking of vocational training for Nat, we were so sad. It seemed to us that we had reached a crossroads, where we had to put Nat into a slot of “vocational kid” rather than “academic kid.” Work rather than college. Another door closing. Lesser rather than better. Disabled for life. Blah.

This was undoubtedly a difficult time for us, as this article I wrote illustrates. But now, 8 years later, I feel differently about the issue of voc ed. This shift took a while, of course, as does every new turn in the autism path. The terrain changes, the forks surprise us, we get tired and can hardly ever rest.  But eventually we could see that as usual the relief came to us from Nat. Nat loved working, much more than any of his school work, and work changed him. With his jobs, Nat grew into a confident young man, because his tasks were clear and complications were few. Just as Nat went in for sports rather than the arts or music or books, he turned out to be a working man. Leave the academics and the indoor life to my other two sons: Nat is a man of action, rather than contemplation.

Parents need to know that it is okay to see their autistic children as a type of person. It gives us comfort and even pleasure to view our disabled children with the same lens as our other kids. It provides a much-needed sense of normalcy to the family. Just like your kid who built towers as a toddler, and you said proudly, “he’s going to be an architect,” your autistic kid did things as a toddler, too. Maybe he was fascinated with fans whirring. It could be that later in life he will be interested in repetition and machinery. Maybe he will become a guy who assembles stuff. You can then connect his job later in life to his hobbies early in life.  Rather than seeing him as a kid who would walk in circles meaninglessly, maybe as a 21 year-old he becomes an active man who delivers coupons for a restaurant and covers great distances happily. Maybe the kid who obsessively lines up toys later in life puts things away, stocks shelves, returns library books to their proper places, folds laundry…

Parents also gotta stop being snobs. Working with ones hands is time-honored and respectable, just as exercise–simply running or biking or walking just for the sake of it, going nowhere on a treadmill–is simple and yet so important. Not every person goes to grad school or even college. But there is likely a job that every person can do. We have to look upon our children for who they are and what they like and not see it as a deficit, but as a mark of their personhood. We have to get out of our 21st century tunnels and see that there is earth beneath our feet that needs to become paths, farms, roads, or preserved park land. Things that we grab hold of, and these things must be made by someone. We need the guy who cleans without stopping, who assembles parts seamlessly, who delivers without complaint, who works without needlessly gossiping with colleagues, without fake sick days. Our guys are not social enough to lie or slack off.

Work ethic is not to be taken likely. Who is happier:  the guy assembling boxes at Papa Gino’s with blissful contentment, or the top executive who has ulcers and never sees his family?

Take a look at this study from the University of Wisconsin, which concludes that those autistic and intellectually disabled students who have jobs as teens are far more likely to work as adults. And then you decide if taking the vocational path is a loss or your child’s good fortune.

Thursday, November 10, 2011

New MA Guide to Transition to 22

My town’s special education director of out-of-district-placements sent me a new online guide to Transition in Massachusetts, put together by the Disability Law Council, Massachusetts Advocates for Children, the Federation for Children with Special Needs, and Northeastern University School of Law.

A Transition Services Online Manual:

(October 2011)

• Basic Legal Rights    • Forms    • Resources    • Video

This Manual is written for parents and students who are advocating for
better transition services, including social, vocational and independent
living skills.  It is written in an easy-to-understand format but also
contains “Endnotes” and an Appendix at the end of the Manual with legal
information for attorneys and experienced advocates.

The Manual was edited by the Disability Law Center (DLC), in partnership
with the Federation for Children with Special Needs, the Institute for
Community Inclusion, and Mass. Advocates for Children.  It was written by
the Northeastern University School of Law Legal Skills in Social Context

Please help spread the word about this Manual by forwarding this
information to your contacts and networks!

DLC will be updating and improving the Manual on a regular basis.  We plan
to include more videos of students, parents and advocates, in English, ASL
and Spanish, as well as updates on legal developments, new forms, and
other practical advice.

Wednesday, November 9, 2011

Me, Giving a Talk

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!

Friday, November 4, 2011

What a mess

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.

Thursday, November 3, 2011

Here is Nat’s Cake

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:

Wednesday, November 2, 2011

And Now, A Moment of Venting

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.

Tuesday, November 1, 2011

Print Version of Dirt is Here!

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!

Cake Ideas, Please?

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…