After 25 years, It's nice to know. -- Fiddler on the Roof
We had a great day, things like hanging out on the porch with sweatshirts and the rain coming down all around us. We saw a rabbit taking shelter under the lawn chair. Later on, the sun came out and we went out to dinner at a lovely new French place in the South End called Gaslight, and we stuffed ourselves. The waiter brought us two glasses of champagne, on the house. After dinner we drove to Back Bay and had ice cream.
Max took pictures just before we went out. Benji was taken to the movies and out to dinner with a friend. Max held down the fort, and even talked to Nat tonight on the phone when he called. The thought of that just makes me melt. A great day. A great quarter century.
We were married on a rainy day The sky was yellow and the grass was gray. --Paul Simon
There is a legend out there that says that the divorce rate in marriages dealing with autism is higher than the national number of 1 in 2. I believe it is still unproven. Is there any data out there on the Herculean strength and enduring love in autism marriages and in the typical autism family?
When I was a girl, my dad said that he was willing to foot the bill for "college and a wedding," and after that, we were on our own. In fact, I had to contribute a healthy chunk of my college tuition by working as a waitress every summer and with student loans to the max, but the fact is, Mom and Dad did manage to pay for the bulk of it -- on teachers' salaries.
This was 1984, before brides spent $75,000 on average for their weddings. Sure, my dress was a satin beauty from Bergdorf's in Manhattan, but it was the one my mom had worn, in 1958. To fit into its retro silhouette, I had to buy a corset, but Victoria's Secret, a fairly new store at the time, only sold one kind. It wasn't even white! We had to tailor the dress in numerous ways, and I even had to use a button-covering tool to replace buttons that had fallen off.
Even though at 21 I was almost the youngest of all of the cousins in my extended family, mine was the first wedding of our families for this generation. There had only been bar and bat mitzvahs and funerals up until then, for years and years. No one knew from weddings. My mother sought the advice of my grandmother (whom we called Mama). Mom did not seek much advice from the bride herself. Dream wedding? Wake up!
The more serious aspects of the wedding were completely out of my hands. It was to be a Jewish wedding, which I knew nothing about, other than what I’d seen in Fiddler on the Roof – complete with chuppa, plain gold wedding bands, face-covering veil, and stepping on a wineglass. I remember all the discussions we had about food, flowers, and guests. I had wanted everything to be red: red flowers, red bridesmaids dresses, but they had felt that was too "hot" for July. We settled on pale pink. I had wanted little pizza hors d'oeuvres, but they felt that was tacky. The only thing that I really really pushed for was to have the top of the wedding cake be chocolate and coconut, because that is what Ned and I loved, and the plan was to save the top in the freezer, and eat it on our first year anniversary.
Two days before my wedding my grandfather died. This was sudden and devastating. I thought we would postpone the wedding, but in Jewish tradition, you never put off a blessing for anything, and so we proceeded with it. I don’t know how Dad managed that day, grieving for his father while giving away his daughter, but he did it all somehow, with every bit of his usual flair, and only my practiced eye could detect the deepened crease running down his forehead. When he and my uncles hoisted me up in a chair and danced around with me, I was afraid I’d fall; but I didn’t. Before I knew it, Mom, Dad, and Mama were kissing me goodbye, and then I was on my honeymoon in Italy with Ned Batchelder, my new husband.
For years after my wedding I still dreamed about magazine-style weddings, where everything is perfect, and what I should have done instead, like have the red flowers and little pizzas and a modern wedding gown and a wedding by the sea, not in a synagogue. But now I hear so much about the weddings of today, the bridezillas and the couples who spend it all to have it all. Yet there is still a 1 in 2 divorce rate. Recently it dawned on me that Mom, Dad, and Mama were probably trying to keep that from happening to me. In doing what they did, they taught me about compromise, negotiation, and listening to your elders. I learned about tradition and family. Perhaps this was where I got the strong foundation that helped me embrace whatever else life gave me.
We never did manage to choke down that bit of freezer-burned wedding cake, though we tried, while sitting in bed in a Cape Cod motel on our first anniversary. But today, July 1st, we have made it to our 25th wedding anniversary. We have made it through the panoply of life's possible and challenging events: deaths, births, autism, adolescence, career changes, mid-life crises.
I think we could only have gotten here because we were carried there on the shoulders of giants.
I don't mean to be flip, but sometimes I think I understand one aspect of Divorced Dad syndrome, because of how it is when Natty's home: I spoil him. I feel the need to make up for the time he is not here, so I want to squeeze in all of the things he loves for the weekends. I try to get all of his favorite meals and treats, I bake with him, I encourage him to listen to his favorite CD and watch his favorite vids. I listen carefully to his self-talk to determine what he's thinking about and wants. I leave him alone and then I can't help myself and I intrude by touching his hair or kissing his face and inhaling his skin. I think it's a mother's right, because we were once attached physically, and because we don't relate in the typical mother-son fashion, I feel more liberal to make my own rules. Mostly those rules are made in strict observation of Nat's responses to me.
The downside is that I don't feel quite natural with Nat anymore. I don't feel our old relationship. I feel much more aware of him as a separate person, despite what I do (mentioned above). It is as if, when he comes home, I am straining to let him back into my life because I have to close up when he goes back. Even though these days I am relieved and happy when he goes back, because then I am free, I still feel a profound lack of him that is an open and gaping space inside me.
When Max and Ben go off somewhere for the day, I am also elated, but there is no guilt attached. I feel like I've earned it and that every mother in the world would agree with me on that. But when Nat goes off, and I feel elated to have time to myself and my other boys, and to have no worries about aggressions or tantrums, I at the same time feel that I have done something wrong to him.
The thing I think I've done wrong is to get on with my life without him in it every day. I know that so many would say that indeed, I have earned that, but I bet that if it happened to you, you would not be so quick to feel that way.
No, I am not ashamed that he has "Gone Residential." I now see that this is a higher level for him, because there at The House he has learned how to get what he needs out of people who are not Mom and Dad. He has figured out how to get along with all kinds of kids. He is put to work every day, on household chores and shopping. He does conversational practice and plays with others. He would not get that here, except sporadically. Here he would get a lot of love and attention, which feeds his soul, and he would get a lot of sweets that would feed his body, but he is not asked to grow much here. I know that.
It is not shame that I feel. Or if it is, it is the shame that comes along with grief, when a person begins to let go of the missing one. They realize that they are not thinking of him every day. That they've done things with their former energy channels. That they seldom bake.
With Nat gone most of the time, I get to play and play with Ben. I never enjoyed playing with a child of mine the way I enjoy him. The way he anthropomorphizes his small stuffed creatures (Z-Brayes, Lobby the Lobster, tiny Link, Drop the Penguin, and Ramses the Ram) feels so believable to me. He has infused them with all of his own sweetness, and they have come alive to me, as beings that I protect (from Ned flicking them across the room, from Max putting them wayyyy up high out of Ben's reach). I store them in my cardigan sleeves to soothe them when they get upset. I teach Z-Brayes how to skate along the dining room table. I stroke Lobby's red ruffled back until he purrs in his bubbly-watery voice.
And then there's Hannah, Max's girlfriend, who has also come into my life fairly recently, kind of right when I needed it, and who allows me to have -- well is this okay to say? -- a daughter. I just love her. I have never known anyone like her, so much like a hoppy bunny. She is a beautiful creature, funny, devlish, innocent, smart, and just plain adorable, and it is beautiful for me to see how Max loves her. She is here most of the week, for dinner, and so I still have 5 to feed. When Nat comes home, it is 6, which also feels natural. I think I was meant to have a very large family.
Something has happened which has set me free to love and to nurture even more than before. When Nat moved out, it's kind of like Z-Brayes and then Hannah moved in. Not because Nat moved out, but somehow, alongside that event, now I have even more loved ones to take care of.
I eat for two walk for two breathe for two now --Natalie Merchant
The 10,000 Maniacs song "Eat for Two" was a hit when I was 5 months pregnant with Nat, the spring of 1989. I remember first hearing it as I was pulling up to our condo in Brookline, a side-by-side brick bowfront Victorian; we had a small apartment on the top floor. This was the first place we ever owned.
Those lyrics went through me in a rush of adrenaline; her pregnancy mirrored mine. "Five months how it grows, five months now I begin to show," are the last lines. It gave me chills; I was just beginning to show, also. And feel his little sweet kicks. But the song was so melancholy, not at all what you usually hear in songs about being pregnant. She was pregnant by accident.
I was pregnant totally on purpose. I was 26. It was late February. After days and days of having this weird insatiable hunger, I went to the doctor (I didn't even take a home pregnancy test!) and found out. But that day, Ned was away in Texas, at a conference. I told him over the phone. He was attending a talk at the time, and could not say much (but, being Ned, that was the usual), but he doodled. He drew all these round, wobbly shapes on a piece of paper, during the talk. Fetus shapes, which he still has in a drawer or box somewhere.
Once I knew I was pregnant, thoughts about anything else just ground to a halt. I quit my job, which I had hated for months. (I was a writer at a small software company in Cambridge.) I had nothing to do, but that's what I wanted. I would take long walks around the Reservoir (where years later, I would run with teenage Nat). I would paint rooms and buy baby tee shirts. I would think and think and think about what my baby was going to look like and how I just could not wait to start my real life.
I also had intense, stomach-cramping fears, terrors about birth defects. I worried about toxoplasmosis (I had a cat). I worried about lead (old old house). I worried about any stray thing that can happen to a fetus and give him Something Wrong. (I had no such worries about Max, incidentally, except for the one time on the Cape when Little Nat came along and dropped a huge rock on my pregnant belly. I did worry some about Unborn Benj, but only the fear that he was somehow a fragile fetus.)
But most of the time, Nat was the dreamchild in my head. It's interesting to me that humans are required to have months and months of head time with their unborn; probably to get them used to the idea of being permanently attached and in charge of another creature.
On the weekends when Nat is home the house just fills up with limbs and noise. My Saturdays and Sundays have a structure to them, an old habit I slip into with Nat around: breakfast before morning events; lunch before afternoon events. Microwave bacon and bagel and butter is his breadfast. (He does it all himself, but he needs me to jumpstart him, by asking if he'd like to have breakfast. He will just walk and walk in a circuit, mentioning "eggs" every now and then in his self-talk, but he will never start his own meal prep. That is still a goal for us.) For lunch, it is leftovers heated up. And fruit.
My boys always know that they have to have several portions of fruit a day. Even when I was on Atkins and could not eat fruit, I still had them eat their fruit. I stand there at the sink in the back kitchen, because that is where the disposal is, and I automatically set out three small bowls and I slice up strawberries. Even when boys are scattered throughout the house and I have no idea when, for instance, Max will amble in, ready to eat, I know that I have to cut up berries for three. They are each fully capable of preparing their own lunches, but still I do it. Old habits, old bonds.
I just found out I am going to be the keynote for a conference in Cheyenne, Wyoming, for the state's Early Intervention and Education Program, on August 10, at around 1pm. Very excited; I haven't been to Wyoming since I was 12. Just the name "Cheyenne" is so amazing! It is SO western!!!! Yay. I have a few different power points that I use but I think with the new book I should use some of the new material. I love having this kind of project to prepare; pulling together just the right information and message is very challenging and fun.
If you live in Massachusetts, please use this simple application to email the Governor about the draconian budget cuts to the Department of Developmental Services. Here is what I wrote:
Dear Governor Patrick,
I am the mother of a nineteen-year-old severely autistic young man. He has been doing terrifically well because of his education and his vocational opportunities. However, with the budget cuts at the Department of Developmental Services and other disability agencies, I am very worried about the impact on individuals like Nat, who have intellectual disabilities -- and their families. The current budget is a potential disaster, a return to the dark times when disabled people had no hope, and their families were the only support they had. How can that be, in a state like Massachusetts, once a leader in civil rights and human services causes??
The cuts total more than $90 million ($43.5 million at DDS alone), which will hurt so many people: Older caregivers at home -- will be even more overburdened Adults with disabilities - will lose supports (and their jobs as a result) High school graduates with disabilities - will be left without options Children living at home - will be isolated with no funding for services
I have just two requests:
1. Please do not hurt us more. We beg you not to veto the funding that did make it into disability line-items. Our friends and families face the same financial uncertainties as others and need these essential supports.
2. Please issue a deficiency/supplemental budget to address the vital programs that we and our loved ones need -- services such as employment/day, family support, transportation and turning 22 at DDS, supported employment, extended employment and independent living services at the Mass. Rehabilitation Commission, and Early Intervention services at the Department of Public Health.
He's strong and seasoned, stretched thin like a piece of old leather His hair flutters around his head like a nest of fluffy grey feathers Times I called him on the phone and cried So worn out so sad I nearly died He always has a way to lift me up again whether by joke, or story, or hand-in-hand Wise and centered even when he ain't He keeps it together, all of us -- incredible restraint My dearest wish for him is to keep running strong Right next to Mom, his inspirational song The thing in my heart is to just tell the world I'm so happy to have been and to always be his little girl.
Given You Children, Milked the Cow
After 25 years, 
I don’t know how Dad managed that day, grieving for his father while giving away his daughter, but he did it all somehow, with every bit of his usual flair, and only my practiced eye could detect the deepened crease running down his forehead. When he and my uncles hoisted me up in a chair and danced around with me, I was afraid I’d fall; but I didn’t. Before I knew it, Mom, Dad, and Mama were kissing me goodbye, and then I was on my honeymoon in Italy with Ned Batchelder, my new husband.
We have made it through the panoply of life's possible and challenging events: deaths, births, autism, adolescence, career changes, mid-life crises.
