Susan Senator

How we made the cake:

Funny how life works. I spent the morning a bit of a wreck from a late night out last night. I was weepy and self-destructive in my thoughts. I did some basic stuff, like cleaning my car and changing the beds, just to feel like a useful human being. I thought, with a defeated sigh, that chocolate was going to figure big in my day, and the thing is, I just lost 4 pounds last month.

Eventually I forced myself to go out, with my laptop. I would pretend I was a writer. The last two Nat essays I’ve been working on (one for Parents Magazine, and one for an anthology of This I Believe essays) were very laborious, so I had convinced myself this ugly morning that I was no longer a writer. Even though Nat is my muse, sometimes I get tired of putting thoughts about him together onscreen. Sometimes it almost reduces him to a two-dimensional being when he is at least 3D. No glasses necessary.

I got to Peet’s and found a seat by the window, the corner of the counter, where you don’t have to be near anyone yet you don’t have to feel guilty for taking a whole table. It was sunny, yet just the right angle that I could still see my screen. The guy who took my order was really kind. I flipped open Twilight Princess and worked steadily until my meter was almost up. A rough draft, at least a start, for a rough day.

But then, the boys started to come home, one by one. The crisp little voice of Ben. The loud, loping stride of Nat. The lazy, LOL-ish I.M. voice of Max. I had a purpose again. I know it’s not good to be defined by other people, but it’s the truth. I love being their Mommy. And so we worked on Max’s birthday cake (the temple from Lost, Season VI). And I realized that writing about my sons doesn’t come close to how great they really are. A picture is worth a thousand words, but three sons are worth a million.

It seems like a wonderful gift to those of us celebrating “Spread the Word to End the R-Word” Day that Massachusetts Governor Deval Patrick has restored residential services for 315 people under the aegis of the Department of Developmental Services (formerly known as the Department of Mental Retardation). DDS is the agency that Nat falls under. Here is the message I received from the ARC of Massachusetts. Note that this excellent development was made possible by federal funds — increased funding to Medicaid under the American Recovery and Reinvestment Act. Yay, Obama! Yay, Deval Patrick, and Yay, Massachusetts!!! And: let’s hope that South Carolina can do the same!

315 will have essential residential services spared

Fulfilling his promise to restore critical disability services if additional funds became available, Governor Deval Patrick today recommended restoring $21 million to the Department of Developmental Services Residential Budget.

Using his errata budget amendment authority, the Governor’s move will save over 300 people who would have lost residential services under his original House 2 proposal.
The Governor has been able to make this recommendation (and other non-DDS restorations) because of additional federal revenue made available from increased Medicaid reimbursement included in the American Recovery and Reinvestment Act (ARRA) and a settlement related to the so-called “clawback” decision by the U.S. Department of Health and Human Services’. That decision relates to Medicare expenses associated with the federal government’s assumption of drug costs for Medicare and Medicaid-eligible residents eligible.

Governor Patrick announced the decision in a phone call this afternoon to ADDP President & CEO Gary Blumenthal.

Blumenthal and The Arc of Massachusetts Executive Leo Sarkissian had been working for several weeks with the Administration on understanding the impact of the proposed FY 11 and annualized FY 10 9c residential cuts.

Sarkissian noted: “Throughout the recession, Governor Patrick has kept the needs of people with disabilities as a top priority for the Commonwealth. He is the only Chief Executive who has shown the willingness to understand the vulnerabilities of the people we serve and their capacity to serve their community.”

Blumenthal stated: “Once again, Governor Patrick has stepped in to make a principled and compassionate decision saving the most vulnerable citizens of the State from losing their homes.”

The Governor’s restoration of the Residential Services Account now shifts the effort of ADDP and The Arc to addressing Day & Employment cuts and Family Support reductions. Mass Families Organizing for Change, DDS Citizens Advisory Boards and other groups were part of this collaboration as well.

This development is one more positive development in the Governor’s support of developmental disability programs this fall and winter including:
October 2009—Governor Patrick protected the bulk of DDS programs from 9C FY 2010 cuts.
November 2009—Governor Patrick reversed a Mass Health decision that would have cut day habilitation programs by 23% and eliminated over $100 million from Mass Health funded programs.
March 2010—Governor Patrick restored $16 million to Residential Services Accounts preventing 230 people with developmental disabilities from losing their residential services.
The Arc and ADDP wish to thank the Governor, EOHHS Secretary JudyAnn Bigby, A&F; Secretary Jay Gonzalez and DDS Commissioner Elin Howe (and their respective staff members) for their collaboration in making this restoration possible. In addition, we are in debt to the hundreds of ADDP and Arc of Massachusetts supporters who called the Governor and legislators to express concern regarding the need to restore funding to the DDS line items.

The budget battle is a long distance marathon, and much work remains.

The Arc and ADDP are pleased with the outpouring of support we have been receiving from individual legislators who continue to demonstrate their support of our community.

The Patrick Administration has given disability advocates solid momentum to build upon with the leaders, and the rank and file of the House and Senate.

Please join us in thanking the Governor by leaving a message at his office at 617-725-4000.

Fantastic. Perfect for March 3d! And kudos to my buddy Tim Shriver as idealistic as they come, who produced The Ringer a few years ago. Here are some clips, a propos to tomorrow’s Spread the Word to End the Word international event. Tomorrow, be aware and make others aware of how the R-word hurts us all!

Here is an excerpt from Chapter 5 of The Autism Mom’s Survival Guide (for Dads, too!). Chapter 5 is called, “Improving Our Love Lives…Yes, That’s Important, Too!”

How do two people who are so many things to each
other (friend, partner, diaper changer, breadwinner, bread
baker, autism teammate) switch gears and go back to being
lovers? It is tough in any kind of family, but with autism in
the mix, the intimacy situation between spouses can be an
even bigger challenge. We’re worried about making it to various
appointments and are dealing with the constant educational
and therapeutic issues that crop up—everything from
learning yet again that a speech therapy session in school did
not happen to wondering how to toilet train, to getting a
child to sleep the whole night or to stop biting.
My friend NancyBea put it this way: “We are not weird
if we’re not having sex. It should be OK to admit that with
autism in the family it’s really hard to have any kind of
sex life.”

Of course it’s not weird if autism parents stop having sex, but
it’s also true that we don’t have to put this aspect of our lives on
hold either. Most of us don’t want to disconnect sexually from
our partners, but how do we prevent it, with such a lot on our
plates? We all know that a person’s sex drive can be buried under
family needs, long work hours, health and self-esteem issues,
even boredom. We also know that autism can compound any of
the above. However, once begun, sex is always worth the effort.
It is so oddly ironic that now, married and older, we think of sex
as something to work at, just as, when we’re young, it takes willpower
not to do it! Nevertheless, I do know that sex is and will
always be a key ingredient to my personal happiness, particularly
in a long-term relationship such as a marriage. But knowing
something and feeling it do not always go hand in hand,
especially with something as complex as sexuality, where there
can be many disconnects between what you want in your mind
and heart and what your body can do.

The psychologists and autism moms I contacted confirmed
that most of us are focused on just getting through
the day. In our harried lives, it is so easy just to let sexuality
go. Dr. Sharon Waller, a clinical psychologist in Brookline,
Massachusetts, says, “In my therapy sessions with autism
moms, it’s hard to get them to focus on themselves. The way
they use the time we have together is to talk about their child.
Their therapy is primarily about getting validation and support
for their decisions related to treatment options for their
child, the IEP process [Individualized Education Program],
and addressing behavioral challenges in their children. When
they do refer to their marriages, they might say in passing,
‘We never have sex anymore.’”

Dr. Waller points out that having children often strains
a marriage, whether the children have special needs or not.
“The research points to a decline in marital satisfaction once
children arrive,” she says. However, the difference autism
makes is in the frequency and intensity of the problems.
When raising an autistic child, challenges crop up again and
again, often unpredictably…

We owe it to ourselves to make sure that there’s room for
intimacy in our lives. No matter what we are up against, love
is a basic human need, necessary for our personal nourishment.
It is indeed possible to honor this need, but in order to
do so, we have to acknowledge that it is really OK , and not
selfish, to want this. So how can people dealing with autism
in their lives allow themselves personal pleasure and connection,
given their busy, demanding, and stressful lives?

The more I asked around, gently, about marital happiness
and thought about the frustrated responses I got, the more
I realized that the only way to approach these dilemmas at
all is to start with small, simple goals. Ned has often said to
me, “If you want to make a change, start with one easy thing
today.” In other words, set yourself up for success. If we go
around thinking of ourselves as “never having sex,” and if we
go right to “Oh, just forget it,” then that door will probably
stay closed longer than it has to…

[Want more? The book will be out March 30th! :-)]

When Nat was 7, he suddenly stopped sleeping through the night. It is an old story already, mine and so many others, of how our lives felt crushed underneath exhaustion without end and the fear that this would never get better. It is old but sharp and terrifying, still lethal, like a rusty knife hiding in the grass. It took months before we found a doctor who knew his ass from his elbow, and prescribed a drug that we had already told about (from my sister, who is a pediatrician) if he would have only listened to me, just a mother…

But let me tell you, I felt so horrible about the idea of giving Nat a drug when he wasn’t sick. The drug meant, to me, that he had something wrong with him and I did not want to see him that way. I don’t see him that way. As they said in that Temple Grandin movie we all loved, “Different, not lesser.” When you say “something wrong with” and the person is not sick — and I do not believe that anything environmental made Nat autistic; he was always autistic and I will show you the baby vids if you’d like to see — you are implying something bad is going on.

(I don’t even like to have to say, “different, not lesser,” frankly. I don’t know why, and I’m tired so I’m not going to try to figure it out. Just a feeling like I’m tiptoeing around Nat when he gets to just stomp all the time.)

The medication question was different when Nat was 11 and out of control in terms of aggression. Out. Of. Control. More accurately, we were out of control of him. I was terrified of my own little boy. One doctor was saying how he needed to go into the school’s residence. Or something even more restrictive. My heart was breaking, but still I kept thinking that if we could just find the right experts to work with him, we could avoid dire action. I called my dad and sobbed into the phone, “They’re saying I should send him to live at his school.”

My parents said that I didn’t have to do that. “Try that medication,” Dad said, referring to Risperadal, an anti-psychotic medication that our psychiatrist had mentioned. But Risperadal has potentially dangerous side effects; other than big weight gains, Risperadal can cause Tardive Dyskenisia, heart, and liver problems.

Ned and I knew that Nat was not ready to live away from home and that I certainly was not ready for it. I’m barely ready for it now, and he’s 20. At the time I thought it was the worst thing you could do to a kid. Those parents that “went residential” we talked about in whispers — like there was something wrong with them! I thought if I sent Nat away that Nat would think he was bad. My heart was breaking. How could God put so much on a family? How was it that I had to make such a choice — either give Nat this serious medication, or send him to live at school, or continue to live with violence and outbursts. We made the decision to try the drug on him. We made it quickly but we made it with deadly seriousness.

My mother called my attention to the new book We’ve Got Issues, by Judith Warner. I have not read it, but I read a review of it today, which described how Warner set out to show how much and how easily we all (over)medicate our kids. But what Warner actually found, upon doing her research, is that her thesis was pretty much incorrect — that parents actually mostly make the decision to put their kids on medication after much deliberation and agonizing, and as a last resort.

I am very glad for Warner’s integrity, to shift her thinking and not try to bend her observations and data to fit her theory. But it also annoys me a lot that Warner believed what she did — that so many of us do. It is so easy for people to believe the worst things about parents today. Parents are our favorite punching bag. It’s so easy to judge others, to think that parents are going off half-assed and carelessly making decisions for their kids. I don’t know anyone like that; do you? Even if I disagree with a parent’s beliefs or choices — I don’t have Nat on a special diet or chelate him, my feeling is (nearly) always one of empathy. I think to myself, Well, I wouldn’t do that, but I don’t know what her thought process is. I don’t know what goes on inside her house. I don’t know what she’s seen her kid do or no longer do. How the hell can I then assume that she is making a decision without much thought, without sleepless nights and weighing options? Punch, punch.

Does the general public actually believe that most parents just decide to give their kids drugs simply to make them achieve more at school or make their lives easier? Why? Why is it so easy to believe the worst in people who are parents, especially people who have a double helping of tsuris on their plate? Do we really believe that parents are that irresponsible and selfish? I’m not talking about the tragic ones who make the headlines. I mean me; I mean my friend Sheila, whose son Sam scaled ten-foot playground fences or crossed Route 9 at night just to see the new pet shop. Or the mom who didn’t get to take a shower today because she is too afraid to leave her kid for a minute. Or you. Can people honestly look at us and say that we are taking the idea of medication lightly? I think it’s what my great-grandma Sarel Wolfson said, that we all have our own bundle of trouble. Maybe we’re just different — but not less.

I believe I enjoy my boys much more now that they’re becoming independent people in their own right, than when they were roly-poly toddlers. While the baby phase is just cuteness galore, and kind of a delicious bath for the senses, there is not as much room or material for actual relationships. But now, my sons as young people are fascinating to watch and get to know.

I remember, in my early 40’s, discovering that I found people more attractive in middle age than when they’re young and ripe. As much as we like to diss Facebook, I am having a great time reconnecting to high school and college friends — and even enemies! There is something delightful about getting closure now that we’ve all been softened by life a bit. Being enemies — I have discovered that I don’t even know why I disliked one person or another in high school. So easy to dismiss, to move on. In one way or another, I think that the overweening, largely undeserved egoism of the teens and twenties becomes seasoned and more humble. I think this has to do with encountering disappointment and even tragedy. This is the other side of my hardship: I get to value what’s good in life when the hardship is absent. I don’t take things or people as much for granted. As I get older, I understand that the charmed life does not really exist.

There is no way you can teach this to younger people. No one could have told me what motherhood — or adulthood — would really be like. The beauty of youth is that you don’t believe bad stuff is going to happen to you and your bearing and body reflect that. When I was a young adult I could simply look the other way when something ugly or not fun came along. I think that’s important to go through because you learn the depths of pleasure and get strong for when stuff starts to go wrong.

On my good days, like today, I have this kind of clarity. At times like this I see autism as one of those kinds of things that brought me down from that rosy era. I was wrecked. I broke. I thought I was dying, actually. I had OCD for a while about germs, aches, pains. Washing, checking, worrying. When really what was going on was sad feelings, my innocence ending, my son revealing himself to be human, not perfect. Those realizations were so hard to bear that I fought them and ran away from them. Sometimes I think the race, the pressure to cure is about not being able to stand what is happening. And I don’t mean parents should give up! Cure is another word for help, for heal. But my life could not be about that forever, because it always gave me a second consciousness when I was with Nat. I’d be with him, trying to enjoy him, but there was also me standing apart and worrying, wishing, wondering what to do next. Separate, cold, and missing him.

I am not telling anyone else how they should perceive their situation because they will feel what they feel. All I know is that eventually this tide of pain and disappointment receded and I could be warm again, just being with Nat. In his own very atypical way, he is becoming an adult in the world, making his own sense of it, doing what he can, growing out of old destructive ways, trying to find his joy. And that, I believe, is what it is all about. At least today.

All parents — and especially autism parents — feel at times that there is just not enough of them to go around. When Nat was younger, in his many different therapy years, scheduling the boys was something that could make my stomach freeze. I have all these memories, probably strands of one braided in with wisps of another, of having regular appointments for Nat precisely at a time when I would have to pick up Benj or he was still napping, and Max was somewhere (in elementary and middle school Max did things like the school’s performing arts stuff, soccer, piano), too. Also, Nat always has gone to school programs far away (in other towns), and so the bus would drop him off at around 3:30. Most appointments, however, only went until 4, and so there would be that teeth-gnashing moment where you feared that the long-awaited slot with that therapist or doctor would slip away because of traffic. Or you’d have to pay for your no-show. Many times I have taken Ben out of school early so that I could drive out to Nat’s school and pick him up and drive back to the appointment, and have Max go to a friend’s house or wait for me in the school library. Although we are in walking distance of their school, there is one busy street that connects our neighborhood to the school neighborhood, and no crossing guard.

Choreography of three boys’ lives was my metier back then as a younger mother. I was the Twyla Tharp of shlep. But in the last four or five years, things have softened up a bit because a) the two younger boys are older and more self-sufficient and can walk places or take the T; b) Max and Ben’s activities are more individualized and therefore not on any program or instructor or team schedule; c) Nat no longer sees a neuropsychologist, an OT, a PT, or an SLP. His activities are all on the weekends, and they are all social rather than therapeutic (and so they are more flexible). His lack of OT, PT, and speech are because we have not been able to find one who treats adults.

I am very proud of the shift from the therapeutic to the social/athletic. This change has made a tremendous difference in Nat and our family’s overall gestalt. Ironically, once we stopped pursuing therapies and treatments to make Nat less autistic, and got him into sports and social groups of mixed levels of ability, Nat became less autistic — or, more accurately, less encumbered by communication, social, and behavioral issues. And no, Nat has not de-auticized; he is just calmer than he used to be and so he is more able to enjoy activities. I honestly do not know what made the difference: a combo of certain meds; an excellent school program; an easing up of our miserable demands that he change into something he’s not; growth.

We feel and are more “normative,” as Nat’s psychiatrist calls it (we still need to see him every three months). Dr. M is all about appearing like typical peers or Normal (that is another version of the N-word, a word to be avoided at all cost. We say “supposedly normal,” or “typically developing” around here). (Dr. M would rather see Nat drinking Coke than anything else because it is what other guys do. Dr. M has his opinions and they are not always like mine but I know a good specialist when I see one now and no one’s perfect. Don’t throw the doctor out with the bath. I know what Dr. M means. He wants Nat to be included in the life of the world as much as possible. Inclusion, open doors, possibility, and potential in every possible way. I get it, and for the most part, I agree. I’m not willing to contort Nat for that purpose, and I’m certainly never going to give that young man Coke, of all things! Nat loves orange soda, anyway.)

So Ned has been out of town this weekend, and I have been visited by the Schedule Woes of Boyhood Past. I managed to do three things just for me (alone) in the last two days: go out for an hour and buy a pair of jeans; have a friend over for coffee so that I wouldn’t have to leave anyone here; and go to my two-hour dance class. All other hours I’ve been either here at the boys’ beck and call, with only Twilight Princess here to talk to, waiting for the next event I have to get someone to on time.

Yesterday I picked up Nat after my bellydance class, so I was in the car for about an hour and a half. Max had to get to Hannah’s, so luckily Hannah’s mom picked him up. I managed then to fit in the walk to Kukoo’s Cafe with Nat, before my friend arrived for a brief coffee. Meanwhile Ben was gainfully occupied with his own mind and creativity, designing a new film, using Flash X, his own sequel to Zelda’s Twilight Princess. The title letters dissolve beautifully and the music he chose is — moody and a propos.

Later on I had to drop off Nat so he could go to dinner theater with his gang, then I took B for a bite to eat at a local dive, then I picked up Max in Boston, then home for a bit, then Max went to a party, then I waited for Nat to be done. Finally, at 11:30, neither Max nor Nat were home and I found myself in the odd position of being a mom waiting up for her two teenage + sons. Tick tock yawn yawn. I fell asleep on the couch in my boots. At 12:30 the phone rings and at last Nat is ready to be picked up. Still no Max. I call him, trying not to sound like an annoyed mother but I was an annoyed mother. Rush to get Nat because I am SO tired and I get back and still no Max. Call again and he sheepishly admits to only just now walking out the door. He has no key so I have to wait up for him.

At one a.m. Max comes home. I settle into bed at last and I can’t fall asleep. I’m tired, but in a good way.

Nat only has a short visit home this weekend. Usually he comes home Fridays after school but this weekend Ned is away at a conference and so I’m on my own with my three gentlemen. On Saturday mornings I like to attend a two-hour bellydance class with a woman who is kind of a philosopher dancer; she talks a lot about the moves, the culture around the moves, and has us try usual things to really internalize the moves. So, needless to say, I really look forward to this class because if there’s anything I like more than bellydancing, it’s talking about bellydancing!

So the only way to go to class was to pick up Nat Saturday after lunch (remember, he requested to stay at The House for lunch!) and because I don’t feel comfortable leaving Max in charge of Nat when I’m 45 minutes away. This is an old concern, probably outmoded, but the thing is, old traumas die hard, if at all. I can’t do that to my other two boys, and also, what does it do to Nat to feel so out of control, without me or Ned there to help him calm down? (Interestingly enough, however, I went out for exactly 7 minutes the other day, leaving Nat watching a video and Ben at the computer. Nothing plugged in, so no chance of fires. Strict orders not to answer the door. Run out if there’s a fire and go next door. But the wild card, of course, was Nat. And life. Nat follows rules, but there are those damned gray areas. His gray matter just doesn’t do gray areas.

I asked Ben if he minded that I was dropping Max off 3.5 minutes away while he stayed here alone with Nat. He shook his head and said matter-of-factly, “If he has a fit or something I can hide under a table.” And he went back to his computer. So I left my peaceful sons, driving, however, with one eye on the clock — I don’t text while I drive but what are the accident stats on worrying about your children while you drive?)

Of course all was well. But still, I try not to do that. So, long story long, that’s why today I didn’t have Nat come home until after lunch.

As soon as we got home and I shoved some lunch into my gullet and showered quickly, I asked Nat to go with me on a short walk to Kukoo’s Cafe, my new favorite spot; it is a tiny Middle-Eastern restaurant painted in yellows and oranges, in a gesso-like texture. Beaded things are festooned from the high ceilings, tables and chairs are charmingly mis-matched and slightly rickety (just like my house!). It would be a place to bellydance, I think, or at least to dream about it.

I always have wanted Nat to go there because it is so warm and comfortable and delicious. And yellow and orange are his favorite colors. And Nat seemed to want to go, even though he’d never even been inside, because whenever I mentioned it he’d say quickly, “Kukoo’s, yes!” So I took him there and we said hello to Ali the owner, and sat outside in the 50 degree sun (I’m serious! Boston! February!) with Elie, his wife and the owner of the yoga studio next door, Inner Space, where I gave a bellydance workshop last week. A couple from my neighborhood strolled by and smiled nicely at us. Nat ate his brownie and I drank a cappuccino, and Elie — clearly Nat’s latest fan — brought him a ginger lemonade, on the house. Nat just collects lady admirers, it seems!

Crossing the street on our way home, we ran into another friend. Indian Spring is such a great time of year, because everyone comes out to be warmed by the sun and each other. And the thing I love, is how comfortable I feel, all of a sudden, in my late 40’s, being out in public with Nat. Not because he has learned to suppress any of his stims; no, those still blaze outwards from him like the rays of the sun. People look; they notice. I notice them noticing. But I don’t feel myself clench. I realized, only recently, that my public reluctance with Nat has worn off. I never thought that would happen, because public outings with Nat was another trauma for me, and as I said, they die hard. But they are killable, it turns out.

As we got to the top of our hill I saw, coming towards us, an older woman, maybe in her 70’s, walking with a young man who was holding her arm and had a walking stick and sunglasses. He must have been her adult son. So there she was, and there I was, both of us out walking with our grown up sons, both of us carefully watching over them, and also enjoying this warm moment we’d been given.

Just got off the phone with Nat’s new teacher (he moved up to an older classroom last week). The teacher told me that the class went on a community trip to a pet store. Immediately I thought, “Uh-oh, Nat doesn’t like animals.” Nat jumps away from a dog or a cat, no matter how gentle. “No dog no dog.” Even if you say, “Nat, it’s a very nice good dog,” He’ll say, “No nice good dog.” In fact, none of my boys like dogs. I think that Nat and Max were terrorized by one at a Christmas party one year, but what’s Benji’s excuse? I ask this because I kind of want a dog, a yellow lab. But I won’t get one, it’s just a fantasy. The fantasy is that the dog will bring out the happy mainstream boy in my sons. Yes, yes, I love them just as they are but sometimes we are just so far off the beaten path. We are lost in the Atypical Forest.

So Nat’s new teacher told me that there’s a penned-off area in the pet store where you can sit and play with puppies or read online on TreeHousePuppies for what dog related things! I love that idea! I might go with Ben just for a little puppy love. Nat’s teacher asked him if he’d like to go in and he said “Yes,” immediately, which is a definite yes rather than a default yes. (If Nat instead answers “Yeh-es,” beware!)

Well, yes it was. So the staff held the doggie and Nat willingly pet it! A real triumph! It was apparently a cocker spaniel, which made me think of Lady and the Tramp, one of Disney’s best and a real favorite of Nat’s. I wonder if Nat noted the resemblance; there is a theory from my autism upbringing that says that generalizing from one environment to another is difficult for “autistic people.” But, if all people with autism have autism in different ways, and all people are different anyway, how would you really know?’

It made me think of Lady, anyway, and how on the ball she was. Especially the way she saved that baby from the rat, at the end of the movie. She barked and barked, and the nanny thought she was a terrible dog and put her out, but Lady got rid of that rat anyway. She knew what she had to do, and did it, despite the ignorant neurotypical human. Her spirit is very familiar to me.

It makes me think of Nat, how he always has his mission. Once, I came upstairs and saw him running from the bathroom with poop cradled in his hands. Drip, drip down the hall into the other bathroom, where he deposited it in the toilet and flushed it down. “What kind of fresh hell is this?” I thought, thinking that now we were going to have smearing and fecal stuff in our lives. But then I remembered: the toilet in the main bathroom was clogged! So to Nat, it was more important that poop be flushed than carrying it in your hands.

He “does what he can.” This was our family’s tagline for him, ever since infancy. The family jokes about how high-energy I am and how poor baby Nat had to always come along for the wild ride with his manic mommy. I would strap him into the stroller, and walk and walk in my boring new neighborhood, chatting to him the whole way. I would throw him into the carseat and take him shopping, for clothes, for food, for anything, just to get us out of the house. He was my constant companion, and he totally put up with my grabbing, running, kissing, yakking. Even if he was a little bit unhappy, he soldiered on. He does what he can, he’s Mini man, as we said.

So Nat has always been a trooper, game for most anything, unless his autism gets in the way and he goes all sensory on us. Now we know how to read the signs, however. Except when we don’t.

Anyway, as soon as the little dog was set down on its own feet, Nat jumped up and ran out of the pen. He does what he can, but he does have his limits.

A Rant.

Linus should probably add one more thing to that litany of stuff he can’t ever talk about with others: autism.

There are times when I am really brought low by the fractious animosity and venom in the autism community. I step back right now and I think, “How can this be? Aren’t we all in the same boat, trying to raise our families and take care of our kids?” Can’t we agree to disagree? I mean, who says any two parents ever could agree on anything? It’s a-different, that’s okay, as Nat would say!

From the very start we are at each other’s throats. I remember being tyrannized by the local La Leche League about how I had to breastfeed or else! I remember being at the playground and realizing my stroller was totally out of style! I remember the sin of giving my baby snacks with real sugar in them, or buying Nat off-brand baby clothes (Gasp! not Hannah Anderson!) … and this was even before autism was a twinkle in someone’s eye. It reminds me of that song, “Let’s Call the Whole Thing Off:”

I Must Be A Total Sloth
I say — epidural, you say– natural
I say “what twaddle,” to breast versus bottle,
Perego! — Sport Buggies!
Cloth diapers! — No, Huggies!
I guess I’m a total sloth.

In the Autism Stone Age, when Nat was a baby, it seemed like the biggest problem was finding other autism parents for support, period. Oh, yeah, and the right school program and therapies to help him.

Maybe we can all just agree that we define the word “help” differently? What’s wrong with that? Why is it so important that the other “side” is also proven wrong?

Maybe I’m just looking for love in all the wrong places. I just wish we could all get along and remember that we are truly all in this together. Now I’m going to press “Publish Post” and pray.

Chapter 3. Spending Time With Our Kids — And Enjoying It.

I’m not proud to admit this, but for the longest time I felt that the only way I could really have fun was just with my husband or with my own friends, not with my children.
I was not a sit-on-the-floor-and-play with-cars kind of mom, particularly because my firstborn only liked to line them up and look at them, with his thumb in his mouth. But even when Max and Ben came along, “pway wif me” were
words that made me feel dull and sleepy. I don’t know why; I
had a lot on my plate, I guess. Maybe I thought their expectations
were higher than they actually were. It wasn’t until I
was an older mom that I grew into my role as Fun Muse, or
at least Willing Companion….

No matter the age of your kids, there are ways to have
fun—ways that both parents and kids can enjoy. Maybe this
is obvious, but it’s important to be reminded of it and keep
it in mind during trying times. Too often we let ourselves get
dragged under by caregiving obligations, and we forget about
simple happiness. Your fun may mean choosing an ordinary,
no-fail activity, such as a trip to the playground, where you
might bring along a crossword puzzle for yourself—unless,
that is, playgrounds are particularly difficult places for your
autistic child. (For instance, my friend Sheila’s son used to take
every opportunity to scale the high fences that surrounded our
park.) Having a few moments to yourself might give you the
energy to then enjoy the next moment, when your child needs
your attention again.

Ed from Ohio says, “Sometimes we take our son to the
park and he uses all the equipment. Sometimes, he will just
walk around the tennis courts thirty times. It’s not all fun—
but it’s not all bad, either.” This may not sound like much of
a rave, but the thing is, parenting any kid is like that: not all
fun, and not all bad.

Donna is a mom from Massachusetts who has learned to
enjoy her son by seeing things from his point of view: “He
loves to jump on a trampoline, ride his bike, and slide down
those large, inflatable slides on the moonwalks that every kid
seems to have at his or her birthday party.” This past summer
her family took a trip overseas. Before the plane took off, the
flight attendant explained about emergency landings. Christopher
appeared very interested and seemed to be following
along in his own safety pamphlet. “He suddenly tugged on
my arm to get my attention to show me the illustration of the
emergency landing, and the people sliding down the inflated
emergency chute,” says Donna. “At that point, he asked, in a
perfectly worded sentence (which made me feel very proud
of his expressive-language skills), if he could ‘have a turn
down the big slide.’ My husband and I chuckled at this sincere
request, but we also made sure to keep him away from
the exit doors!” Donna and her husband were tickled by
Christopher’s way of seeing things, so different from theirs,
and thus the plane ride was a bonding experience rather than
a stressful one.

No matter how difficult it can be sometimes with children,
especially those on the spectrum, many autism parents
summon up the energy from somewhere to get their kids out
into the world.

“Our kids deserve a childhood!” Kim, my friend in Connecticut wrote to me. When I asked her what she does for
fun with them, she had a lot to say: “The kids love swimming and the house we just rented has a pool. That was an easy treat—going to the town pool was too difficult with all three,
as you can imagine.” Kim also says that her kids love amusement parks and carousels. “Shocking, isn’t it,” she says jokingly, “they love to spin!” She summed up her thoughts like this: “We try to do everything any parent does with their kids.
We might go for a shorter period of time or less frequently,
but we’ve never let autism trap us in our home.”

Amen.

During February break as a young woman, I used to stay with my grandmas in Florida. They lived in Fort Lauderdale, a mile apart. My sister Laura would join me, and those were some of the best days I’ve ever had.

Laura and I, of course, had nothing to do back then but get tan, laugh, and fight. And exercise. Another important fact: the grandmas — called “Grandma,” and “Mama” (why? because they were both named Esther. So we couldn’t call one Grandma Esther, because that was the other wone, too!) — were both a little competitive with each other.

Grandma was very protective. She held on tight. She poured her love all over me, in buckets. In cake pans. She baked three cakes for me when I’d arrive there. She would sit with me and she would regale me with stories from 20-60 years ago of people who had done her wrong.

Mama on the other hand, spoiled us differently. She would prepare these amazing brunches for us, with every glorious fruit available, with sturgeon and lox and whitefish. White linen napkins. And she would just beam at us and listen. She let Laura and me do whatever we wanted. She let us leave the condo. She let us go for runs without worrying about dangerous men. She let us go swimming without worrying about our drowning. She knew how to let go.

So there were struggles, needless to say. How my heart breaks now to think of how fickle I was, how spoiled. How I just ran off from Grandma’s place to freedom at Mama’s. And I remember Grandma once yelled, “What does she got over there, the Brooklyn Bridge?” as I went running out of the house. This became part of our family lore, needless to say. But I remember it with a twinge of guilt and heartbreak because I wish that Grandma and Mama were still here. I also wished I could have been a nicer granddaughter but I was young and growing up and still learning…

This past weekend was like any other in our house. Nat came home from school, and we were all in and out of the house for the entire weekend, mostly eating together. With me, pouring my love down on Nat in buckets, spoiling him with a huge chocolate peanut butter heart, with a trip to Starbucks, CVS, Stop&Shop;, with buttered bagels, homecooked chili, and Sprite.

But when I dropped him back at The House yesterday, and asked him when he would like to come home next weekend — before lunch or after lunch — he said, “Lunch at [The House.] Lunch at [The House!!!!]!!!!!”

I said, “Nat, you would rather eat lunch at The House than at home?”
and Nat said, “Lunch at The House!!!”

I got into the car, sulking a little bit. Ned said, “Oh, snap!” And today, after I told Max the story, he said, “What do they got over there, the Brooklyn Bridge?”

As we have been hearing, Special Olympics is on a tear to get the use of the word “retarded” taken out of usage. I am all for this; I bought my “Spread the word to End the Word” tee shirt, which I and many many others across the globe will wear on March 3 to this end (and to end this).

We have also been hearing about the controversy over some of the proposed changes to the DSM-V (Kevin Leitch does a great job illustrating this controversy), whereby the diagnosis of “Asperger’s Syndrome” will now be folded into the Autism Spectrum Disorder in general. Some “Aspies” (not all!) are feeling uncomfortable or downright angry at being lumped in with the other ends of the Autism Spectrum, with the more severely involved cases of autism. I heard something about how they didn’t want to have the same dx as “adults who needed diaper changes.” Those who have spoken this angrily are being taken to task for their attitude towards severe autism, which frequently is accompanied by mental retardation. (At the same time, the new DSM also proposes leaving out mention of the high numbers of autistics with coginitive delays).

What’s going on is people are being forced to look at something they do not want to look at. Mental retardation can often accompany autism. Mental retardation is a tough row to hoe. But — it doesn’t have to be as hard as it has become. The struggle of having some sort of physical or mental limitation is hard enough, but we always add to that a value judgment. People see mental retardation and its accompanying difficulties as something to be ashamed of. I think we have to acknowledge that and figure out where we go from there.

Since the beginning of time people have been trying to distinguish themselves from others whom they deemed were less than them somehow. Each time this has happened, groups rise up and protest being made lesser. They create awareness. They point out the easy steps towards awareness, towards remedying the pain. We all see the struggles of African Americans, gays, Jews, et al. Change begins with words. Then you get laws in place. Then, at last, you start to get social change. But that takes a long, long time. But — okay, it’s still worthwhile. Separate drinking fountains were abolished by law, Ruby Bridges was given a military escort to a white school. But until enough time and discussion are spent on these issues, you don’t get the change in attitudes. Because even if everyone stops using the word “retard,” there will still be so many who hate the concept of cognitive delay, who feel that it is the worst thing on earth to be that way.

Almost two years ago, I wrote about the r-word debate. There I made the point that yes, it was terrible the way people often unconsciously used the word “retard” as a substitute for “stupid.” Some use it consciously, and they make fun of people with cognitive disabilities purposefully. They see them as beneath them, as sub-human. I wrote,

“when I think about Nat’s loveliness and complexity and I realize that, because of his IQ, others may indeed miss that entirely, I feel it like a knife in my heart. Because Nat is so much more than a test score, or an arrangement of chromosomes. Nat is a regular person, neither idiot nor angel, with flaws and virtues like all of us. I, like all mothers, want others to really know him and to love him, not to revile him.”

But I made another point as well: Is stigma in the eye of the beholder? Or is stigma located in the heart of the stigmatized? Was Hester Prynne degraded by having to wear the A and admit to being an adulteress, or was the shame ultimately on her community for judging her so harshly? We know how that story ends, after all. In the end, wasn’t the point “Let all who are without sin cast the first stone?”

The Special Olympics campaign to end the r-word is only the first step. This is the raising-awareness step.

I will wear my “Spread the Word to End the Word” on March 3, because I see it as the first step towards creating awareness, towards making people really look at the word and think about it.

But — I feel in my heart that ending the word will not end the shaming until we get rid of the hate for difference.

For years I have been certain that when parenting an autistic child — or any for that matter — one should not give up hope. It’s too bad that the word “hope” can sometimes conjure up images of sugary, mawkish sentiment, bright-eyed kittens or teddy bears holding balloons. Because the truth is, hope works. Hope is a really good thing and should not become sentimentalized, turned into a four-letter-word.

Today I read a friend’s blogpost about her little boy, and his IEP meeting. The nadir of the meeting was when she was told of her son’s IQ testing and what it led to. You can probably guess. Without going further into that, and how I could relate to the sense of injustice elicited by our children’s low IQ scores, I want to write about where this wonderful mom “K” went with this. The jumping-off point was the IQ/MR thing, but the important thing to me was what K forgot when she jumped.

The whole testing thing made her think about abilities, “normal,” and otherwise. K thought back to some commercial, where a young boy comes home to an empty house and because he’s hungry, he goes and makes himself some mac and cheese. He reads the directions on the box, executes them correctly, serves and then successfully feeds himself. K writes — correctly — about how this mundane set of tasks is actually a miracle. She says

“Do you know how amazing a feat all of that is, for a child to take the initiative to seek out something to eat, read the instructions and follow them, seek out and find the proper utensils for preparation of said food, use the microwave safely and correctly, and then eat the food without burning themselves or dropping the food? To just be able to use a fork? That commercial is a goddamned miracle. M just barely learned how to use a fork about 2 months ago. Just the motion of stabbing the food with the tines and ensuring you don’t overload the fork is actually a very complex task that most people take for granted. M being able to carry out all the steps depicted in that commercial seems like something straight out of a science fiction novel to me.”

K is absolutely correct here. Both the boy in the commercial and her own son have done miraculous things. K knows this.

I remember feeling this way, too. Sometimes I still do. I, too, have watched commercials, birthday parties, sporting events, loving interactions between mother and child, and I, too have come away thinking about how Nat is so different and so unable, and yet I could also understand how amazing Nat’s accomplishments were.

The thing is, there were also times like this, six years ago, where I had no hope that Nat would ever be able to master the next level or the next. It seemed like so many levels to rise to. It seemed like childhood — that precious time in life where many inabilities are forgiven — was too short a time for what he needed to learn.

Yesterday Nat came home and simply — and miraculously — asked me, unprompted, for a snack. Today Nat came into the kitchen and simply — and miraculously — made his own bagel. Yes, they were pre-sliced. Yes, I had briefly gone over his choices. But, at 20, he now can — pretty much — take care of his own physical needs. He did learn how to cook simple meals for himself. Just as, years ago, at last, he did learn how to use a toilet. He learned, over time. He developed, over time. No magic, just good ole education and perseverance. You decide how to pronounce the latter.

Nat’s body and brain grew and developed. There has been no capping-off point, no closing-of-the-window. 0-3 means nothing when you are atypically wired. Just as we don’t have to take to heart what the DSM 1-5 says about us or our kids, we don’t have to take to heart the whole snapping of the elastic mind warnings. They are just guidelines. But the results have infinite variations.

I always thought I had so little time. Now I realize that Nat had time to develop, but that now I have so little time to appreciate my boys as children, for who they are. I squandered so much time worrying about what they were not.

Do you feel cut off from a child simply because of his autism? I know I feel that way a lot. Well, perhaps you and I might want to take another look at that. Perhaps it’s not autism, or not just autism that makes it hard for you to know your child; perhaps it’s that he’s a boy. Perhaps it’s that she’s a girl. Perhaps it’s because they’re all just people and we never actually know the insides of another person’s head, do we?

I don’t know a whole lot more about what is in my teenage son Max’s head, either, and he certainly does not have autism. He is two years younger than his autistic brother Nat — almost 18. And he is a continual surprise to me — just like his older brother.

Today in the car on the way to high school drop-off — I ought to rename that little ten-minute period something like Time of Revelation With Max — I asked him nonchalantly if he was sure it was okay that I was driving him. Usually he walks with his friend Yaz, unless it is very late or very cold. Today was neither, yet he had directed me to drive him to school after we dropped off Benj, my eleven-year-old.

“Yeah, it’s good that I’m not meeting up with Yaz today because it’s February 12 and that’s Fight Day.”

“What?”

“Fight Day is the 12th of every month. We fight the whole way to school. All day.”

I laughed, which is amazing for me at 8a.m. most days. It feels like my face will just crack right off. “What? You fight?”

“Yeah. We, you know, rag on each other the whole time. And the 13th is Peace Day, when we make up. So it’s kind of funny that he’ll, like, be waiting for me and I won’t be there.” These are high school seniors. This may sound weird, but I haven’t really seen Max fight or insult anyone much. He’s really very well-behaved, at least around me. But, see? I don’t know everything about Max.

At first I just drove on, thinking back to my high school days. Fight Day? Would I ever have had something like that with Cynthia R, my best friend at the time? I know when we were in junior high we once in a while did fake fighting, and slow-motion fighting, but we never institutionalized it. And just a whole day of put-downs? Forget it. And by the way, I was way more of a bitch than Max. Sometimes I was really a Mean Girl, I am sorry to say. So when I think of Max being fight-y, it is just such a surprise.

I said, “Well, maybe it’s a guy thing.”

“Girls fight like that all the time, every day,” Max said, as we pulled up behind the headmaster’s car. “See ya,” he said.

I watched him lope up the steps, a tall beautiful young man, my darling child, who is also a mystery to me.

The thrill of victory…the agony of defeat. I remember that was some kind of tagline for a sports show which I never watched. I have never been into sports. Neither has Ned. Nor Max, nor Ben. For me it was just that I doubted my physical abilities, and didn’t find out that I had them until my forties! For Ned, it was not an interest, not even on his radar. For Max and Ben, not liking sports seems almost to be a cultural choice, a way of defining themselves away from the pack.

Nat has no such baggage. So he has (pretty much) always been willing to try any sport, and Special Olympics was the place to go. There were other organizations that welcomed him, but somehow the magic was not there — or else Nat’s development wasn’t there, or the team was a bad match, or something.

Nat played in the state qualifiers last Sunday, along with all of his teammates — both the team he practices with here at home on Saturdays, and the team he practices with at The House during the week.

Nat’s team lost both games. And this made me realize that the media should always cover Special Olympics statewide events, the same way they cover “Regular” school statewide sports. You’ll see, at the end of a given season, a big spread on this-or-that high school athlete, the one who helped their team win for the year at the state championships. You’ll see shots of students scoring goals, or their headshots when they’ve been given a scholarship to college or scholarships for high school students because of their athletic success.

But you’ll pretty much never see media coverage of Special Olympics unless it is in the human interest sections of the newspaper. A feel-good story. And of course, that makes sense because Special Olympics does make everyone feel good. But then everyone misses the bigger point: that it is a sports competition.

At the state qualifiers, I saw Nat’s team play together for the first time. I met the teammates and assessed them in my head. I wondered if this one or that one could shoot and score; I wondered how skilled Nat would be this year. When the game started, I saw the Unified Players run their asses off, and then during a time-out or a substitution, I listened to how they would whisper with each other about the rival team’s strategies (Yes, I said strategies!!). I also heard our Unified Players (non-special needs) saying with a little bit of anxiety: “They’re running plays!” and then figure out, with the coaches, what to do, who to put in when. I saw tight-lipped coaches, and persnickety refs. I wanted Nat to be put in more. But he was not as much on his game that day, let’s face it!

I also saw the teammates do fist bumps and high-fives whenever one of them made a basket, and the pride on their faces. The way some of them just could not stop looking at their mothers, and so would miss the ball. The way one of them did not know which basket to shoot at.

Our team lost both games. Still, in the larger world, the newspapers report on the Colts as well as the Saints, right? You want to read all about what happened. The brilliant plays, the failed plays. The thing you could have done better than that guy, or the thing that makes that guy a god.

It is the same at SO. And in addition, there is the knowledge of all the SO athletes’ personal challenges that they push themselves to overcome. At the Special Olympics, no one is phoning it in.

Very, very “special,” as you might say, and so endearing that we felt tidal waves of tears whenever anything happened — disappointing or wonderful.

You would, too. If you could find the story anywhere else but here.

I visited Nat in his new classroom today, and I timed it to arrive during lunch, when he works at the counter, serving lunches to his peers. This is one of four part-time jobs Nat has (the other two of which are at Papa Gino’s, which I have told you about ad infinitum because I am just so proud of him.) At his school Nat serves lunches (he puts out the milk, puts a tray of the entree on each student’s tray, and then later he wipes clean the trays). The job coach prompts him with pictures of each task, only with a gesture, and only when Nat seems spacey. He has a high frequency of success with this job.

He smiled and bounced around, doing his puppet hand the whole time, but he knew what he had to do. Don’t be fooled by stims or self-talk; and watch what you say around your autistic loved one. I have learned that Nat listens to everything we say!

Nat’s other job is to take snack orders from the classrooms and to then go to the supplies closet and fill the orders and deliver them. He’s like the Good Humor man, I guess!

The third job, as you must know, is to make boxes of all sorts at Papa Gino’s. One person I talked to recently said that she would not want her son to work “in the back,” but I don’t see why not. Work is work. Nat is happy in the back. Chris the job coach told me today that Nat has among the highest box output in the place. They love him there. He even punches a time clock.

The fourth job is to hang coupons on doors of houses in the neighborhood. Another thing you must know about Nat is that he is always always moving. He is a skinny guy, with a lot of energy and a metabolism to match. Chris told me that Nat is extremely fast and productive in the neighborhoods. He said, “Nat can cover four streets in one hour!” He also is developing his street smarts, and he watches Chris to adjust his own speed. No one is as fast as my thoroughbred Nat.

So– next time you find one of these on your door, think about the person who may have delivered it, and smile!