Susan Senator

I have an idea rattling around in my head, for a book project. Tell me 1) who is your autism or disability leader/rebel/outside-of-the-box thinker and 2) what have they created/figured out that distinguishes them? Mine would be Ari Ne’eman, Temple Grandin, Peter Gerhardt, and Eunice Shriver, for starters. People like that, who have begun a movement or figured out something incredibly helpful.  Send me your leaders, your heroes!

The Coalition for Brookline Autism Parents (CoBAP)
Invites you to
An intimate evening with Susan Senator,
local and acclaimed author,
Making Peace With Autism:  One Family’s Story of Struggle,
Discovery and Unexpected Gifts
and The Autism Mom’s Survival Guide:  Creating a Balanced and Happy Life
While Raising a Child With Autism

This SUNDAY, MAY 1st, 2011 • 7pm
Boston Institute for Psychotherapy
1415 Beacon St. • Brookline, MA

Space is limited. Please RSVP to: [ mailto:cobaprsvp@yahoo.com
]cobaprsvp@yahoo.com or call Beth at 617/566-3652 for more information

Nat made his nightly call tonight and he sounded so small, so quiet.  I felt that familiar pang immediately, of wanting to go to The House and look at him and get a sense of him.  Of course I could have, if I wanted to.  But I also didn’t want to.  I am tired, I need to be here.  And nothing is wrong with him or The House, I know that.  It is just a pang, or a ping, a question.  Is he okay, the words whisper and blow coldly across my heart.  I know he is.  But I just can’t let go.

Letting go is one of my most difficult, biggest struggles.  I know how to do it, how it actually feels to let something go.   I have certainly let many things go in my life, or I’d be miserable, or insane.  But I have so much trouble with it.  I can’t visualize how it feels to drop someone from your everyday consciousness, even one or two relationships that are clearly not good for me.

But I don’t mean Nat.  I’m certainly not trying to do that with Nat.  Others tell me I have to let him go, because he’s grown up.  The problem is, I don’t believe that he is grown up enough.  Stop telling me I have to do that, just because he’s 21.  And stop telling me I am treating him like a little boy.  He’s not.  I have the utmost respect for him.  He is not a baby even though his words and expressions are sometimes so innocent and youthful.  No, it is none of those things.  He and I are just not there yet and that is going to have to be okay.

I don’t have to let him go yet.  We have time before that.  I should be letting him go when I’m older and closer to not being able to care for him.  I don’t mean last possible minute; I just mean that it doesn’t have to be now.  I have to believe that when the time is really right, it will be easier for me.  Just like letting him move into The Residence:  it was doable; not easy, but doable when he was 18, far more than it would have been when he was 11, when we first considered having him live away from home.  Back then, because of Resperadal, we had the choice at last, we had a calm island we could all get to, and so we were given time to work things out with Nat so that he was okay again.  I consider Resperadal a gift to our family, a gift to Nat.  That drug allowed us to hold onto him until he and we were ready for that big change.  And lately, he has not needed it quite so much, so we have been decreasing his dosage.  That he can handle that is another miracle, another gift.

When I hear his wistful voice these days I wonder how I can reach him, if he doesn’t live here most of the time.  I am not wondering how I can stop wondering.  I am not looking to let all that go.  I have done a lot of that stretching, and so has he, but now, enough.  I need to feel close to him again.  I need to hear the fullness of his voice and then I know I have done my job.  For today.

1. Thou Shalt Love Your Child No Matter What (I am That I am)

2. Thou Shalt Not Worship The False Prophets of Autism (No False Idols)

3. Though Shalt Not Make False Promises or Claims To Others About a Cure (Thou Shalt Not Lie)

4. Remember a Happy Day and Keep it Holy (Remember The Sabbath)

5. Honor The Mother and Father — Thine Teachers and Doctors Must Honor You, the Parents, and Vice Versa

6. Thou Shalt Not Hurt Your Child With Unproven Therapies (Do No Harm)

7. Thou Shalt Respect Your Child’s Rights To Privacy and All Self-Expression that is Non-Injurious (Protect Their Sexuality, Physicality)

8. Thou Shalt Not Claim that Autism Has Stolen Your Child (Thou Shalt Not Steal)

9. Thou Shalt Not Speak Ill of Other Autism Parents (Don’t Be Part of the Problem)

10. Thou Shalt Not Wish For What You Think Another Family Has; Thou Shalt Not Compare Children (Thou Shalt Not Covet)

And remember, that just as The Old Testament, otherwise known as The Torah, the Jewish Bible, says that there are actually 613 Commandments — so there’s way more where that comes from. Also, interestingly enough, the Commandments are also referred to as the Mitzvot, or The Blessings. Think about it.

Nat has invented his own form of lying.

When he came home from school Friday afternoon, I noticed he was losing his voice.  All of the “silly talk”  was silly whispering.  As soon as I remarked on it, Nat said, “Social group.”  Anytime I pointed out that he was sick, he would say, “Social Group.”  So he was letting me know he was sick by basically saying, “please let me go to social group anyway.”  Yet he would never say, “Yes,” when I asked him if he was sick.

The next day his voice was almost gone.  And he had a swollen pink goopy left eye.  “Oh Nat,” I said. “You have pink eye.”

“Circus,” he whispered.  Saturday they were supposed to go to the circus.

“But Nat, you’re sick.”

“Circus.”

Nat had drawn a line in the sand.  And I hate disappointing him.  But he is so cute, so wide-eyed (at least his right eye was) and transparent in his desires.  So honest.  And yet also dodging the truth:  pink eye.  A pink lie.  So against my best judgment Nat went to the circus.

Today his eye was cemented closed by that conjunctivitis crust and his cough is even juicier.  We have no activities today.  But our doctor does have a few Sunday hours.  “Nat, I’m taking you to the doctor today.”

“Yes,” he whispered, accepting a warm compress and a blanket.  Now it’s serious — now that there’s nothing fun planned!

Here is my latest column for the Brookline Tab.  Much of this story has already appeared in this blog, but I always post my publications, so…  Enjoy it again!

This article came my way via an advocate who receives regular updates from the White House.

Next time someone suggests that we cut government spending on principal, tell them that you know of some specific government programs that do a world of good for the very needy.  Medicaid is one such program, and Obama’s Affordable Healthcare Act (so viciously fought by the Tea Party) aims to improve Medicaid by making it more flexible and innovative, state by state.

By the way, how do we pay?  We end the Bush Tax Cuts for the rich, those who make more than $250,000 a year.  That tiny percentage of Americans can afford to pay way more in taxes than they are doing, and that would help pay for all of the programs that help make America the greatest country in the world.

New flexibility for states to improve Medicaid and implement innovative practices:
New rules will make Medicaid more flexible and efficient, helping states provide better care and lower costs

The U.S. Department of Health and Human Services (HHS) today announced four initiatives to give states more flexibility to adopt innovative new practices and provide better, more coordinated care for people with Medicaid and Medicare while helping reduce costs for states and families.  The initiatives support the Obama administration’s work to make Medicaid more flexible and efficient and to address long-term cost growth.  Several of the announcements also help implement provisions of the Affordable Care Act.  Today HHS announced:

• Fifteen states will receive federal funding to develop better ways to coordinate care for people with Medicare and Medicaid coverage, also known as dual eligibles, who often have complex and costly health care needs.
• All states will receive increased flexibility to provide home and community-based services for more people living with disabilities.
• All states are eligible to receive more money to develop simpler and more efficient information technology (IT) systems to modernize Medicaid enrollment.
• A proposal by the state of New Jersey for flexibility to expand health coverage for nearly 70,000 low-income residents has been approved.
• “Medicaid programs provide health coverage for millions of low-income Americans who otherwise would lack access to health care,” said HHS Secretary Kathleen Sebelius.  “With these new resources and flexibilities, states will have new options to make their Medicaid programs work better for the people they serve, while helping lower their costs.”

Coordinated Care for People with Medicare and Medicaid

Under a new initiative funded by the Affordable Care Act, 15 states will receive up to $1 million each to develop new ways to meet the often complex and costly medical needs of the approximately nine million Americans who are eligible for both the Medicare and Medicaid programs, known as “dual eligibles.”  The goal of the program is to eliminate duplication of services for these patients, expand access to needed care and improve the lives of dual eligibles, while lowering costs. [Who can argue with that??]  The new Federal Coordinated Health Care Office, or the Duels Office, at the Centers for Medicare & Medicaid Services (CMS), was created by the Affordable Care Act to improve care for dual eligibles and will work with the states to implement the top strategies to coordinate primary, acute, behavioral and long-term supports and services for dual eligibles, improving quality and lowering costs.

The 15 states that will receive these funds are California, Colorado, Connecticut, Massachusetts, Michigan, Minnesota, New York, North Carolina, Oklahoma, Oregon, South Carolina, Tennessee, Vermont, Washington and Wisconsin.

“Beneficiaries who are in both Medicare and Medicaid can face different benefit plans, different rules for how to get those benefits and potential conflicts in care plans among providers who do not coordinate with each other,” said Donald M. Berwick, M.D., administrator of CMS.  “This can be disastrous for those beneficiaries who are most vulnerable and in need of help.”

Helping People with Disabilities Live in their Communities

CMS proposed new rules today giving states new flexibility for their programs to help people with disabilities choose to live in their communities rather than in institutions.  The proposed rules reduce administrative barriers for states seeking to help multiple populations, which may include seniors and/or people with different types of disabilities.  They will also allow individuals to participate in the design of their own array of services and supports, including such things as personal care and respite services for caregivers.

“These long awaited rules will help people living with disabilities realize the promise of the ADA to live in the least restrictive environments possible for them—like their own homes,” said Henry Claypool, director of the Office on Disability at HHS.  “With these new tools as well as incentives included in the Affordable Care Act, states, working closely with advocacy groups, beneficiaries, and other stakeholders, can more easily develop effective plans to improve options for people with disabilities.  We hope states will take advantage of this new flexibility.”

The proposed rule, CMS-2296-P, can be found at www.ofr.gov/inspection.aspx.

Developing and Upgrading Medicaid IT Enrollment Systems

New rules issued today will provide 90-percent of the cost for states to develop and upgrade their IT systems to help people enroll in Medicaid or the Children’s Health Insurance Program (CHIP) – and
75-percent of ongoing operational costs.  This increase over the previous federal matching rate of
50-percent will help states prepare for the Medicaid improvements and expansion that will come in 2014 from the Affordable Care Act, when many more Americans will be eligible for these programs, and to coordinate enrollment with the Exchanges.  The rules establish performance standards for the improved eligibility systems to promote greater efficiency and a more consumer-friendly enrollment process.

The final regulation, CMS-2346-F, can be found at www.ofr.gov/inspection.aspx.

Expanding Health Coverage in New Jersey

HHS Secretary Kathleen Sebelius today approved a Section 1115 demonstration for New Jersey that will expand health coverage to nearly 70,000 uninsured, low-income people through the Work First New Jersey program.  In addition, the state will increase care coordination to improve health outcomes for participants in the program.

“This demonstration is yet another example of the many flexibilities states have to adapt their Medicaid programs to better serve their residents,” said Secretary Sebelius.  “I want to commend New Jersey for expanding coverage to people in need.”

For more information about these announcements, visit www.cms.gov/apps/media/fact_sheets.asp.

Sometimes I look at my boys and I think, “Those are my eggs.”  I am full of wonder at what they once were, and how they evolved into who they are now.  But what happened with the oldest one?

A few weeks ago, we had Nat’s ITP, which is his Individualized Transition Planning meeting.  Among other things, we were told by our Department of Developmental Services liaison that we should be seriously transitioning Nat away from Home weekends.  Our liaison told us, very sensibly, that we need to do this in order to make the case that Nat needs residential support and cannot live at home after graduation.

Nat can’t live with us.  I can say that now, 21 years after Nat’s birth.  When Nat first hatched, my fluffy yellow chick, he was so raw and vulnerable.  I could not feel happy because I was so afraid for him.  I did not believe I could leave him with anyone, not even Ned.  I actually thought he might die if I did (when he was a week old, my first outing).  Maybe all people feel that way with their firstborn, though.

Nat can be without me now, for weeks at a time.  And that’s how it has to be.  Nat can’t live at home.  But this is not about how age appropriate it is for a young man to live away from his parents.  If he lives at home, he regresses.  He becomes a walking nerve ending, taut gangly ganglia.  He goes through activities in a rote, rushed way.  I don’t know if he enjoys anything when he’s home, other than his social group.

Which is age appropriate.  I guess.  But sometimes I have to admit I feel like I’m stretching things.  I worry that I’m making stuff up.  How do I really know for sure?

But I always maintain that knowing Nat is part leap of faith, part optimism, part mystery, and part nuts and bolts fact.  Today I am thinking of the mystery.  I’m not all that optimistic because I’m sad that he’s not with me today.  I’m in a coffee shop alone.  I have all the time in the world.  No one is gulping down a huge brownie and standing up, ready to lope back home.

I have mixed feelings about those kinds of soothing arguments people make when I am heartbroken about one particular passage or another.  When Nat first moved out, a lot of people rushed to say, “Well, he’s almost 18.  He would be going to college at this point…”

Yeah, don’t finish that sentence, thanks.  I am not that together that I can just go with that, strong and smiling.  The fact is, Nat is not going to college, it is not the same thing.  Nat is going to be living in an apartment with other guys, like Max, but the guys won’t be like Max.  And Nat will have 24 hour oversight by another adult, someone who would know to call 911 at appropriate times and not open the door to random people.

I sound crabby and I suppose I am.  I missed Nat so much this weekend.  But this was also one of the best weekends I’ve had in a long time.  I went to a party that was just perfect:  enough people I knew, some I’ve known forever, and also others I sort of knew, and still more I wanted to know.  I was dressed right.  There was dinner, dancing, heavily-frosted birthday cake.  My handsome husband even danced with me.  The only anxiety I had was whether Nat was having an okay time in the Residence.  Was he sad without us?

Will I always have this gentle pressure in my throat, my chest, Nat’s presence inside me?  A kind of peripheral pain – not even an ache, but a sigh.  I think so.  He is my son, but he is the son who will always need my help in order to survive.  My other two sons already know how to keep themselves alive and even thriving – and one of them is only 13.  Nat knows how to do many things, but he still doesn’t know to do them.

I feel like if I go on like this I run the danger of people feeling sorry for me.  Or people telling me to stop feeling sorry for myself.  But it is not myself I’m sorry for.  It’s my darling, my not quite fully-cooked egg.

I’m going to Town Hall tonight to present my vision of a group home for 3-5 young men with autism that is safe, lively, and affordable.  Here is my proposal.  Feel free to adapt this to your own vision.  For now, don’t think about funding, think about what your kid needs.  Create your vision and work from there.

Background:

Since 1991 there has been a tremendous increase in people living with autism.  The CDC estimates autism occurs in 1 out of 110 births, more children than pediatric cancer, AIDS, and diabetes combined, * up from 2 in 10,000 in the 1980’s. The CDC considers the rise in autism to be a public health crisis.  Furthermore, this increased population from the last two decades is now aging out of the public school system. According to a recent article in Parade Magazine, “In the next 15 years, an estimated 500,000 autistic children will graduate out of school systems in the U.S.”  This factor, combined with decreased entitlement money and strained governmental budgets, and the trend to encourage independent, non-institutional living for all, is creating a need for more supported housing than in recent years.  Today the outlook for individuals on the autism spectrum is often bright, due to public education and Early Intervention.  Many children and then adults on the autism spectrum can live in their communities, work, and otherwise lead fulfilling lives – provided there are adequate supports.

Rationale:

According to Dr. Peter Gerhardt, Journal of Contemporary Psychotherapy, “The University of Miami/Nova Southeastern University CARD (2008) conducted an on-line survey of approximately 200 families of transition-age and adult constituents with ASD.  The results indicate that 85% of adults with autism still lived with parents, siblings, or older relatives.” This would indicate that there is a huge need for affordable and adequately staffed housing to be developed for this particular population.

Mission:

To create a small, affordable group home in Xtown, MA, a town that is already diverse and accepting of all different populations, is close to Boston and many cultural attractions and opportunities.  This home would be specifically geared towards young men with moderate to severe autism.

Description of Home:

1. Number of tenants varies according to funding levels: anywhere from 3-5.

a) 3 tenants and 1 live-in 24/7 caregiver, asleep overnight but on the same floor; or

b) Up to 5 tenants with rotating shifts of 24/7 staff, with ratios of:  2:5, 1-2 :4, and 1:3.

c) Caregiver would have his/her own bedroom, preferably bathroom, and some office space.

2. Tenants are expected to be out of the home 9-3, M-F in day programs or jobs, which would leave caregiver free time during the day.

3. Saturdays and Sundays tenants would have staff when they are in the “program.”  Some (possibly all) might go to their family homes for part of the day on Saturday, Saturday night, and part of the day on Sunday.

4. Home must be close to a T line to encourage community outings and greater opportunities for socialization and entertainment.  The home would ideally be first floor, to contain noise from any excessive pacing of these tenants.  Hopefully the home would be located on a side street for greater walking safety.

Staffing:

Autism spectrum carries with it particular and unique issues and challenges, different from other developmental disorders: communication, social, behavior, sensory, and cognitive issues.  We feel that it is beneficial to this population to have caregivers that are experienced with autism, particularly ABA, Applied Behavioral Analysis training, a form of behavior modification that has been proven to be a beneficial treatment for autism for several decades, according to and article in the April 4 Wall Street Journal. It makes economic and therapeutic sense for tenants with similar needs and profiles to live together, sharing trained staff. There would be a well-trained staff person on site 24/7, whenever there are people at home. It is expected that some or all tenants would go to their family homes for Saturday night.

Funding:

1. Staff:  Live-in caregiver would be funded by pooled Adult Foster Care money for 3 people, or, if there is state funding available, there would be rotating shifts of staff at a 1:4 ratio.

2.  House:

a) Advocates, Inc., would purchase house using a combination of bank financing and loans/grant from the state or town, private fundraising, and perhaps work with a bank interested in CRA points.

Advocates has a long, successful track record in the adult housing and supports arena.  Advocates was founded in 1975 by a group of volunteers providing patient rehabilitation services on the grounds of Westborough State Hospital, Advocates is now one of the largest human services organizations in the state. Today, Advocate employs over 1000 staff members and serves 20,000 individuals at over 100 sites across Eastern and Central Massachusetts.

b) X Housing Authority would provide a Project-Based Section 8 Voucher to subsidize the mortgage at 120% fair rate

c) Tenants would pay rent to Advocates using 30% of their SSI income.

d) Any remaining purchasing cost would be provided by a one-time capital investment by a non-profit interested in supporting low-income housing for people with disabilities.

*http://www.cdc.gov/ncbddd/autism/index.html

We are now phasing in more away weekends for Nat, to accustom him more to making his weekends work well in the group home.  The problem is, I got the idea in my head a while back that Nat’s move-out in November, at 22 would be similar to Max’s move to college this fall.  I mentioned this topic to Nat a couple of times, not knowing I was contributing to his anxiety level. At school he has been having episodes of anxiety which are almost always around House to School, vans, dismissal, and absences.

I forget sometimes just how much Nat knows, even though we are all hearing frequently about this person with autism or that one who learned to communicate at last and almost the first thing he or she said was, “Stop treating me like I don’t understand!!!!”  (Carly Fleischmann is my favorite success story; I know the family personally and I really admire Carly for her skills and quick wit. Carly also attended Extreme Sports Camp with Nat.)

Nat doesn’t like to type to communicate, but he is becoming very adept at terse, no-frills speaking.  The other day the staff had to pull the van over to the side of the road because one of Nat’s housemates was having a seizure.  Nat kept repeating, “Drive to school,” or some other of his commands, but of course they could not until the student was restored to calm and safety.  This occurrence also meant that Nat could not get the explanations he needed to calm down, and having the bus pull over is a huge deviation from the routine.  These days, Nat needs us to talk to him, regularly, and also, to watch what we say.

Nat is a thin guy, all bone, sinew, and neuron.  He almost jangles with neurological activity when he walks.  During the fall, we reduced his Resperadal — in my view, the less of it, the better, because of potential side effects — and he became more lively.  Actually, he became more alive.  And being alive comes with anxiety and worry as well as joy and other emotions.

I believe the lower dose of Resperadal made him able to talk more.  It makes sense:  if you are less sedated, you are more awake.  He has less to shield him from what’s going on around him.  We believe he can handle this now, and so far, so good.  This development reminds me of when he was 10 and we tried him on zoloft.  Zoloft cut down on his anxiety a bit too much, so he was way too relaxed and giddy, and eventually became mischievous, which then begat aggression.  (Or so we think.)

Nat is talking bit by bit, more and more, yet with every new occurrence of his competence, we are surprised.  It’s become a thing for Ned and me, more of our Couple Culture (which I think is a key to successful marriage.  You need to have history that you enjoy and refer to and laugh about.  You need to be loyal to your couple history, and elevate it above anything else in your life.  That is my two cents, and I’ve been happily married for nearly 27 years).  So Ned and I have our Nat stories that we bring back to each other, like I did with the Stop&Shop trip; that was the Saturday Nat Story.

Last Sunday Ned took Nat on a walk into our downtown and they passed a woman in a car that was double-parked, in front of an empty space; she was waiting for traffic to clear so that she could parallel park there.  She was waiting too long for Boston standards.  This is the kind of annoying thing other drivers notice and honk at.

After they passed her, Nat turned around to look at the car sitting there.  Staring at the woman and the car for some time, Nat finally pointed right at her and quietly said: “Park.”

Sometimes less is so much more.

Oh, Stop&Shop.  I have come to you for food for 23 years.  I have complained about your sometimes bruised fruit, your empty shelves, your lack of Atkins bars.  I have loved you for your workers with disabilities, the guy who chats a bit too much about the Red Sox and food; the young man I recognize from one of Nat’s social groups; the man who covers his ears while he packs.  The summer job kids from Brookline High School; the woman from Town Hall who has a job here, too, on the register.

We can walk to Stop&Shop.  We did that many times with our boys when they were younger.  Stop&Shop back then was a dreaded destination.  The worst time was when Nat had some kind of terrible outburst outside, when we were done.  Back then he had few communication skills and so did we, so we did not always understand what was wrong for him.  My blood pressure shot way up, as always, and I switched into Please God Make It Stop mode, along with Ned, who had the bulk of the physical struggle.  I remember watching Ned wrestle Nat to the curb.  I remember wondering if violence was now going to be a part of our lives.  I remember talking to my therapist afterwards, to see if she thought we had handled it alright.  I felt like I was in trouble, that some agency was going to rule us unfit parents and take Natty away.  As difficult has things have been, I always always wanted to hang onto him.  He is my responsibility, and that is that.

Today I took Nat to the Stop&Shop, the only feelings I had were the dread of crowds and anticipating the boredom of food-shopping.  Nat was clearly into the outing.  I was feeling strong.  When I’m strong I remember to let him do things, I take more risks.  So I hung back to see how much he would do.

He tried to get the cart out but they were all stuck together.  He tried to pull it twice, both times taking another cart with it.  He let it go and looked at me.  “Here’s what you do, Nat,” I said.  “You push this one and pull on this one.”  He was already walking into the store with the cart I had untangled, but okay, I was with the program.  He was pushing the cart today.

We wended our way through Boca burgers, mayo, and lo-and-behold:  Atkins bars.  I told him to find the sugar, once we were in the baking aisle.  He went ahead, looking but not with focus.  “Look on the lower shelves, Nat.  The sugar is usually down there.”  It was always down there, yellow bags bright as sunlight but I didn’t want to embarrass him for not being able to find it.  “Look down, Nat.”  He looked down, and picked up confectioners’ sugar.  “No, not that bag.  A yellow bag.”  He touched the right bag but did not pick it up.  I did and showed him the word.  “Nat, read this.”

“Sugar.”

“Good, Darling.”  And then we finished up.  I only had a few items so I thought I’d do Self-Check-Out.  I started scanning and then I remembered that Nat has been training at a mock shelving room in his school, to scan bar codes and shelve items.  I wondered… “Nat, why don’t you help me scan these.  You know about bar codes. You look for this.” I showed him the black lines.  He started picking up boxes but moving them haphazardly across the eye.  A little more guidance, okay.  “Here,” I said, orienting the box correctly.  I handed boxes to him in the right orientation and then I saw that he was getting it.  He was holding them correctly and placing them in just the right place for the beep, then putting them on the conveyor belt.  This was generalization of a skill, right before my eyes.

When it was done, while I was paying, I tried another thing, why not?  “Nat, will you bag?”  I didn’t wait for his answer because I had to press buttons.  Then I looked up, and he was holding a bag and putting stuff into it.  He’d already finished one bag, and it was in the cart.

My blood pressure was up, I was running quickly after him as he pushed the full cart out the door.  He stopped at the curb to let a car go by.  He had looked for cars.  Another blessing.  He loaded the stuff into the car.  He got into the back seat, because that is where he likes to ride.  He carried all but one bag into the house.

A trip to the Stop&Shop on a Saturday has made my day.  How many people with typically-developing children can say that?

Sometimes we think autism is the worst thing a parent could deal with, right up there with life-threatening illness.  Those of us who have years of experiencing a child’s unpredictable outbursts and scary aggression, sleepless nights and seizures, bolting or numb, withdrawn behavior — we hate what can accompany autism for real reasons.

Or is that put too simplistically?  Are we hating autism, or is it important to tease that emotion apart?

I am a believer in psychotherapy, in looking as deeply and honestly into difficult emotions as possible, because I have learned firsthand that facing that stuff, understanding your uglies, is paradoxically the way into happiness.   Looking it in the eye and saying, ultimately, “Yeah, that’s me,” is the first step towards changing that.  I have found that acceptance leads to change.  Something shifts for you inside, and then outside.

I realized recently that I have made it a personal goal to learn to embrace all that is me, and softly try to change the things that make me suffer.  Understand that this is not a narcissistic, self-centered, contemplation of the navel kind of impulse; this is about change and progress that emanates outward and affects others positively, too.  Shifting my focus from externals that bother me, to understanding my own response, ultimately eases that pain.  And then things start to change around me.

I’ve written a great deal about that moment on the couch with Nat, nearly 10 years ago, when he was 12 — his horrible fake laughter driving me crazy, wringing me out, and then, what that turned into:  a spark, a shared laugh, a real bond.  And why?  Because I dove into it, rather than trying to stop it.

Who wants to dive into shit?  None of us.  I’m remembering when I interviewed Donnie, the first manager of Nat’s group home, the reason we decided it was okay to let him go there.  Donnie is just a guy, bright and happy, doing his job — and yet a hero.  Donnie said something like this to me, “How many of us start our day thinking, ‘wow, I can’t wait to get in there and start cleaning up poop accidents’… but it’s times like seeing the guys make it to the Special Olympics State Games that made it all worth it.”

There’s something about dropping the barrier that’s keeping you from the ugliness.  Letting go of that is ultimately life-changing.  Life change can be big, like going to the State Games, or it can be tiny, like a moment on your couch when you stopped feeling sad and mad about your kid.  I bet that if you think about it, you will see that a lot of your happiest moments occurred when you least expected them and in fact at times you were dreading something.

I was riding into work on the T and I ran into a colleague I only know from here and there in the English Department.  I always try not to run into people I know on the train because there is something about having a conversation in front of silent strangers that I find really awkward.  But, there he was, and I settled into a chat, that brittle first-time getting-to-know-you conversation I just dread.

Eventually the conversation turned to a recommendation for a CPAP pillow to help with my sleep, what else do we do, and I mentioned that I have written several books.  So, of course, what are they about, and there we are, talking about autism.  I don’t want to talk about Nat, my feelings, my discoveries, my heart’s most important thoughts to someone I don’t know who I’m going to see almost daily.  I’d rather choose my mode — writing or giving talks.  But okay, there’s something about this guy’s eyes that are kind, a kind of ease in standing next to him, that makes me feel like I can share Nat with him.

I found myself telling him about Nat’s jobs.  Because I’m so accustomed to having people react with unwanted sympathy, I braced myself but went ahead nevertheless.  I really do believe that the General Public need to know about Nat, and get pushed out of their comfort zone the way I have been by him and autism.  But in doing so, I have to push myself out of my own comfort zone and take risks like this.

“Well, Nat delivers messages within his school, and he serves lunch, and he fills snack orders from other classrooms,” I began.  “He also delivers coupons at Papa Gino’s, in the neighborhoods there.”  I was reluctant to talk about how he makes boxes at Papa Gino’s, because that one sounds the most like the sheltered workshop kind of job, the one I dreaded most for Nat when he was younger.  Assembly of things:  right up there with janitorial tasks; not the kind of job I once envisioned for my firstborn, grandson of Harvard graduates, teachers, professors, son of a mathematician, yada blah blah. But, fuck it, stop being such a snob, Susan.  Look at it in the face.  Say it, thinking about Nat, bouncing around, saying, “You make boxes PaGinos!”

And so I did:  “Nat also makes boxes at Papa Gino’s.”  I paused.  “I know, you’re probably getting a little depressed at this point, thinking of a 21-year-old whose favorite job is making pizza boxes.”

“No, actually,” my colleague said, “My first job was delivering pizza, and my favorite part of the job was when there was nothing else to deliver, so we had to make boxes.  I found it really comforting.”

It felt like a pile of mud had slid right off of me.  Suddenly I was clean, I could breathe.  I knew then that it was going to be a really good day.