Susan Senator

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.

In circles other than my autism world, I find myself at a different starting point with regard to Nat.  It seems I got a lot of ‘splainin’ to do.  These days everyone has a someone with autism, and so that particular experience informs theirs.  It is difficult to dislodge people’s perception of autism, and of course, that is one of the things I live for:  changing the world to make it a better place for people who have similar challenges to Nat.

Last night I had a teaching opportunity, and I blew it.  I was not prepared, even though I knew it was coming.  I was at a shiva, which is a post-funeral Jewish gathering similar to to the Catholic wake.  I had just met a man who was friendly and interesting and we got around to the subject of our kids.  “My guys are 21, 19, and 13,” I said.  Wait for it, wait for it —

“Oh, so the 21-year-old.  Done with college, off on his own…?”

D’oh, and it had been such a light and bouncy conversation until then.  “Well, no, he has pretty severe autism, so…”  Here’s one tip:  don’t be elliptical.  Don’t dot-dot-dot.  Offer your most impressive news first.  Here’s what I should have said, “Well, no, he’s been working for a while.  About to move into his own place.  He’s got pretty severe autism.”  This way, I keep myself — and Nat– on equal footing.  I don’t want no Goddamn sympathy.  Or if I do, I choose the moment when I get it.

No, I didn’t think on my feet.  They guy kind of blanched and said, “Oh, that can be SUCH a burden, to think about his future… I have a friend whose daughter…”

I let him talk.  It was a shiva, after all.  He was wearing a yarmulke, for God’s sake!  I’m kidding, because I feel bad.  I should not have let him refer to someone even remotely like Nat as a burden.  Only I get to say he’s a burden!  Or something like that.  Here’s autism parent tip #2:  Cement your loyalty to your kid.  You already love him.  You would not trade him for the world.  So go with that.  And then, think about what you are proud of, make a list right now.  I’ll help you start:

My autistic kid is:

1)   Really cute

2)   Funny

3)   Unusual, interesting

4)   Thought-provoking

5)   Loves life

6)   Gives my life a challenge

7)   Does not hide his feelings

Let’s all start being really brave.  Learn from my pathetic example.  And I don’t mean tell-people-off brave.  That’s easy, as tough as it is.  Being a bitch is the low-hanging fruit.  The greater challenge is to stay with them, assume they are well-meaning, and then rise above what they are saying and show them – don’t tell them, show them, gently but firmly – that they have it wrong.   I think that it is our duty – no, it is our privilege – to teach the world about our guys, to lessen the misery out there.  Yes, autism spectrum disorders – or, to use the language that the Neurodiversity crowd employs – behavior issues, social challenges, and the other  co-morbid symptoms that often accompany autism – are a challenge and even horrible at times.  But that is not the news.  Scoop everyone with your own positive story.

Hannah’s mom Cynthia sent me this letter from a friend of a friend who is in Japan at the moment.  It just took my breath away.

Subject: Blessings

Hello My Lovely Family and Friends,

First I want to thank you so very much for your concern for me. I am very touched. I also wish to apologize for a generic message to you all. But it seems the best way at the moment to get my message to you.

Things here in Sendai have been rather surreal. But I am very blessed to have wonderful friends who are helping me a lot. Since my shack is even more worthy of that name, I am now staying at a friend’s home. We share supplies like water, food and a kerosene heater. We sleep lined up in one room, eat by candlelight, share stories. It is warm, friendly, and beautiful.

During the day we help each other clean up the mess in our homes. People sit in their cars, looking at news on their navigation screens, or line up to get drinking water when a source is open. If someone has water running in their home, they put out sign so people can come to fill up their jugs and buckets.

Utterly amazingly where I am there has been no looting, no pushing in lines. People leave their front door open, as it is safer when an earthquake strikes. People keep saying, “Oh, this is how it used to be in the old days when everyone helped one another.”

Quakes keep coming. Last night they struck about every 15 minutes. Sirens are constant and helicopters pass overhead often.

We got water for a few hours in our homes last night, and now it is for half a day. Electricity came on this afternoon. Gas has not yet come on. But all of this is by area. Some people have these things, others do not. No one has washed for several days. We feel grubby, but there are so much more important concerns than that for us now. I love this peeling away of non-essentials. Living fully on the level of instinct, of intuition, of caring, of what is needed for survival, not just of me, but of the entire group.

There are strange parallel universes happening. Houses a mess in some places, yet then a house with futons or laundry out drying in the sun. People lining up for water and food, and yet a few people out walking their dogs. All happening at the same time.

Other unexpected touches of beauty are first, the silence at night. No cars. No one out on the streets. And the heavens at night are scattered with stars. I usually can see about two, but now the whole sky is filled. The mountains are Sendai are solid and with the crisp air we can see them silhouetted against the sky magnificently.

And the Japanese themselves are so wonderful. I come back to my shack to check on it each day, now to send this e-mail since the electricity is on, and I find food and water left in my entranceway. I have no idea from whom, but it is there. Old men in green hats go from door to door checking to see if everyone is OK. People talk to complete strangers asking if they need help. I see no signs of fear. Resignation, yes, but fear or panic, no.

They tell us we can expect aftershocks, and even other major quakes, for another month or more. And we are getting constant tremors, rolls, shaking, rumbling. I am blessed in that I live in a part of Sendai that is a bit elevated, a bit more solid than other parts. So, so far this area is better off than others.  Last night my friend’s husband came in from the country, bringing food and water. Blessed again.

Somehow at this time I realize from direct experience that there is indeed an enormous Cosmic evolutionary step that is occurring all over the world right at this moment. And somehow as I experience the events happening now in Japan, I can feel my heart opening very wide. My brother asked me if I felt so small because of all that is happening. I don’t. Rather, I feel as part of something happening that much larger than myself. This wave of birthing (worldwide) is hard, and yet magnificent.

Recently, I blogged about a serious threat to adults with developmental disabilities who wish to live as independently as possibly, and in their communities rather than in institutions:  cuts to MassHealth.  The particular programs singled out to be reduced were Adult Foster Care, which provides funds for live-in caregivers to keep people in their homes, as well as DayHab, which provides therapeutic day programs to people.  I also sent a letter to Governor Deval Patrick in January about this same issue.  And on February 22, I went to a hearing with perhaps 60 other adult service providers and clients to give testimony about how devastating these cuts would be, and how mean-spirited they are, considering how little real revenue the specific cuts would give back to Massachusetts.  (I say cut the MCAS spending instead, the Massachusetts Comprehensive Assessment “System,” which is really just one standardized test that determines graduation in Massachusetts!!!!!  The citizens of poorer towns and cities, ESL students, and students with disabilities tend to be penalized and kept from graduation because of the MCAS, regardless of how they perform in their entire career of school.)

Anyway, today I got word from The Arc of Massachusetts that the MassHealth cuts are on hold.  Here is the text of the Arc message:

Thank You Governor, Secretary Bigby and MassHealth Director Dougherty!

After listening to stakeholders, the administration has decided to hold on the MassHealth rate reductions for Day Habiltitation, Adult Foster Care and Adult Day Health. A special thanks to the Governor and his administrative team.

Although the possibility of reductions during this fiscal year continues (through June 30), we hope that they will be less likely as each week progresses. Thank you to those that helped educate our leaders about the impact of the reductions.

For 2012, we need to look to our legislative leaders and the rank and file, who supported our programs for this fiscal year. We need to make sure that the programs are fully funded.

We encourage you to thank Governor Patrick, Secretary Bigby and Director Dougherty. We appreciate the time they took to meet and review the issues as well as their responsiveness.

Every weekend that Nat is home — and we are now starting to wean ourselves from that pattern, to prepare Nat and ourselves for Post-22 November — there is tension.  This is not to say that the tension is Nat’s fault; it is no one’s fault.  It is a dynamic.  Maybe I shouldn’t say “there is tension,” using the passive voice.  Because the thing is, it is I feeling the tension.  I am, and maybe Ben.  Nat and Max:  birds of a feather, ducks with water rolling off their backs, or some such foul analogy.

I feel the tension because I know Nat so well.  I know what he is looking for when he runs upstairs and then runs back down.  Well, actually, I don’t know why he runs upstairs first; maybe to burn off some of that high-octane energy of his.  But I do know why he runs down:  to check on everyone else’s routine.  I have written about this many times.  Nat gets very focused on what others are doing given a particular time of day, and he repeats to them what he believes they should be doing — over and over — usually until they do it.

We have been schooled over the years not to give in to this kind of behavior.  This may seem high-handed and centered on us and what we want, rather than on what Nat wants, but it actually is not, because giving in is sometimes actually escalating to Nat.  Nat often craves the safety of a firm remark, the closure of crisp, stark-edged reassurance:  “Nat, I will eat my eggs after my workout, and you have to stop talking about it now.”

I feel tense as I wait for Ned to finish whatever he is doing on the computer at any given moment, so that he can deal with Nat.  The tension happens with Ned because I usually anticipate Nat’s anxiety and I structure some of my routines around avoiding that.  I am a a wimp and I have failed Behavior Modification 101.

Ben also feels the tension.  He used to run away or capitulate at once, running to put on his shoes the minute Nat said, “Ben will put on his shoes.”  Even if Ben wasn’t going out.  I get a creepy feeling when I think about Ben feeling forced to do this unnecessary thing just to keep the peace; kind of like someone being forced to dance when a bad guy shoots the ground, saying, “Dance.”  Or a hostage who has to give the criminal all of his stuff.  I hate seeing loved ones humbled.

Now Ben makes faces at Nat when he is being bossy.  Or he mimics him.  I have such mixed feelings when I see this.  On one hand, I am so glad that he is no longer a victim, that he stands up to Nat, who is a foot taller and very strong.  But on the other hand, I feel bad for Nat who may be confused as to why Ben is shoving his angry face into Nat’s face.  Does Nat feel bad, like he is being harassed, or teased?  Is this just, that Ben should do this?  It makes me very uncomfortable.  I often say, “Ben,” with a little bit of exasperation in my voice.  And he’ll say, through gritted teeth, “But he’s SO ANNOYING!”

Nat just looks at him and blinks, but what does he think of that?  And what does Ben think — that I feel bad for Nat and no compassion for him?

The other day, however, I thought of a new thing to say:  “Ben, does it ever help to remember that he does stuff like that because of his disability — that his neurons have grown together kind of wrong, and they are making him really anxious?  What does that feel like to you, to think that way.”

Ben’s voice was rough and quiet:  “Uh, it makes me feel really sad,” he said.

“Oh,” I gulped. Oh. My. God. “Yeah, I know,” was all I could say, because my heart was in my mouth.

Tonight I gave a brief talk at the Boston University School of Education, an event to mark the “Spread the Word to End the Word” campaign.  The End the Word campaign originated with Special Olympics and Best Buddies, is about raising awareness of how misuse of the word “retarded” is painful for people with developmental and intellectual disabilities.   This isn’t about PC.  This is about how name-calling hurts and is a bad thing.

What is worse, however, than calling someone a name is limiting someone based on a label.  Tonight, the speaker who followed me was Jack Kelly, a man in his sixties, who has Cerebral Palsy.  Jack is an avid football and hockey player, a coach, a teacher, and an all around good guy whose message to us was, “don’t tell people they can’t.”  Jack was lucky to have parents who were teachers, who knew what the human mind was capable of, and so they rode him hard to become successful.  Jack’s dad was a Notre Dame man, so football was really important to him.  So Jack and his dad tossed a football “every night,” said Jack, and that could not have been easy, with CP.  Jack’s mom worked hard with him on all of his academics, and he eventually graduated from Salem State University.

The point here, though, is not his credentials; it’s his moxie.  He grew up in a very different time than Nat.  No ADA, no IDEA.  He could only get what he pushed for.

He was told he could not play football, even though it was his (and his dad’s) favorite thing in the whole world.  Even though he knew how to play.  He went to doctor after doctor, all of whom said, “No, he shouldn’t play because he’ll get hurt.”

Jack’s mom said, “He could get hurt walking across the street!”

Finally they found a doc who said, “Let him play!”  And Jack played.  His teammates tied his pads on, and made sure they were tight.  He can’t remember today how often they won, but the point is, they played.  He now has taken his game to Special Olympics, where I’m sure he is kicking people into shape right and left!

Jack asked the audience at one point, why it was that parents get so devastated when they learn their child has a disability.  He pointed the question mostly at me and the other speaker, another mom (the others in the room were professors and students).  I got to thinking, because it was fascinating to me that he, as a son, did not understand why a mom or dad would feel anger and denial about something that has been a part of him his entire life.  He actually shouted the question at us.

Afterwards I sought him out.  I told him what I thought.  “It is probably because they’re terrified,” I said.  For most of us, it is not about vanity at all, or not getting what we thought we deserved out of life.  For the most part, we react so strongly to the news of our child’s disability because we are terrified for them.  We don’t want our child’s life to be hard.  We don’t want our child to suffer.  And disability seems to signify that to so many.  I won’t pretend it isn’t true.  Nat’s life is going to be and has been hard.  Just existing in a world you don’t easily comprehend can be hard; and when others have expectations of you that don’t make sense, that’s hard, too.

Nat’s life is also going to be hard for me, and for Ned, as we try to find him supports in his adulthood.  His life has been hard for his brothers, who have to live with the fact that they will never have a conversation about Little Big Planet or Mario or Myst or this teacher or that girl, with him.

There are so many things we can all imagine that we don’t get to do.  The list is exhaustive and exhausting.  You can just make shit up on the spot about what you don’t get, what you can’t do.   Or you can be like Jack Kelly and say, “Don’t tell me I can’t.”

To my readers,
I am thinking of organizing a March on DC to restore the proposed cuts to the budget.  I don’t know how to do that, but I want to gather all concerned parents and citizens to protest these cuts.
This week, Congress could cut a deal on the budget. And if Republicans get their way, billions will be cut from programs that millions of Americans count on – while tax cuts for the richest are protected.

But most people don’t have any idea what’s at stake – and how devastating these cuts would be to their communities – even though the cuts could take effect within weeks. So to help sound the alarm, MoveOn pulled together a list of the top 10 worst things about the Republican budget.  By the way, one item that should have made the list:  billions to be cut from Medicaid, which is the only program for many many developmentally disabled adults that will give them something to do with their days, as well as live-in help to enable them to avoid nursing homes, institutions!!

Check it out here.

It’s really awful. Share with anyone you can to help get the word out and stop this terrible plan.

Thanks!

Max’s 19th birthday is coming up on Wednesday, March 9, but the family (and Hannah, his girlfriend) could not coordinate schedules, so we celebrated tonight, with a Lord of the Rings cake:  The Shire.  Max is rereading LOTR, and so is Hannah.  Naturally I enjoyed this endeavor with mixed feelings, happy for us, delighted in the cake, but sad that Nat was not here; he loves frosting.  I will give him a can of it when I see him next.

Something highly unusual for my family has just happened, and I want to share it:  I was just given exclusive rights to publish my son Ben’s poem.  He is 12.  He is not on the autistic spectrum, but is solidly on the artistic spectrum!  Enjoy!

Forêt
By Benjamin Batchelder

Let’s take a walk
My little friends
‘Tween the curly trees
Down the path that bends

Come along, keep up
For these woods be strange
You will get lost
And there you will change

Locked in the forest
Forever and ever
You will wander and trip
‘Till you pass to the Nether

Your soul will wither
Your limbs will grow slender
Best catch up quickly
I hear souls are quite tender…

The Demons of Wood
They scream and they hate
You’ve got one chance
To be free of this fate

Oh no, it appears
Your time may be up
The Demons of Wood
It is now that they sup.

In short, you are hopeless.
Hopeless as dust.
So keep up with me,
You must…
You must…

copyright, 2011, Fraxinus Redlektab, and Susan Senator

I can’t seem to get to Nat lately.  It feels kind of blurred and rough around the edges whenever I focus on him.  He is like a big anxious bird, hopping along ahead of me, his new haircut all rumpled like golden fluttery feathers because he never brushes his hair.  Easily startled, like when my dear friend Jody recognized us downtown.  “Hi Nat!  I haven’t seen you in a long time,” she said, so happy to have run into us.  I said, “Nat, say hi to Jody!”

He wrenched his neck up, like a great ostrich lifting his head from the sand, and, eyes stretched wide open, said, “Hi Jo-ey.” The effort to go public — for him, not me — is painfully obvious during phases like this.  Why?

This kind of weekend prompts a great deal of sadness in me when he goes back to the House on these Sunday afternoons.  When I can’t quite connect to Nat, I can’t help but feel like I’ve failed one of the most important goals in my life. People tell me, when they sense I am too overprotective, that I am not him.  But when you have a child who exists in the world in an apparently very different kind of consciousness, or at least a very private space, from others, it is hard to know where his edges are.  It is hard to know when he ends and you begin.

I hate it when people tell me I’ve got to let go.  Even the kind ones say it to me.  F off, all of you, you just don’t know what I know.  All of Nat’s life I have been so afraid of not standing next to him, or these days, behind him, as he walks through the crowded streets.  When they first told me I had to send him off to a preschool, I rebelled inside.  I couldn’t believe that was the thing to do!  Rip a little boy from the comfort of his mommy, a boy who did not like being in new places, around new people?  Why wasn’t the answer something like, “You have to hold him even more!  More hugs!  You’re doing it just right, now you have to do it even more.”

Well, there was no boy who was hugged more than Nat.  This was one Refrigerator who was constantly overheated.  You could have said I was a Furnace Mother, for sure.  But all my hugs weren’t doing any good.  He was still so anxious, overly alert one moment and clouded in cotton another.

I learned, after his success in school, that my instincts are not always right.  That’s the problem with instinct.  It feels right, it comes right from the center of your being:  your gut.  But we are not just gut.  We have minds that inform us.  And outside of our minds, are other people’s minds who might know even more than us. The problem is, that the best course of action is sometimes a bit of both, or 20% one, 80% the other, or 32% one, 68% the other — and so it is nearly impossible to get it right.  We only know by looking backwards, after it’s over.

If I could only get Nat to look backwards, sometimes, and check in with me, rather than blundering ahead.  Checking in is key to connection.  Of course, he is checking in with me, in his own way.  He hears my voice calling him even when I’m almost whispering.  The night that he got lost, I wonder what he was listening for.  My voice was nowhere to be found, and yet he made his way back to the hockey arena from the parking lot, on his own.

One of these days I’m going to have to admit to myself that I am not Nat’s sole bond to the world.  As bouncy and floaty as he is, he seems to be holding on pretty well on his own.

I love feeling like this, on top of my game, enjoying everything I have to do today.  Delighting in my coffee, my cheese, eggs, my workout.  Working on my new novel.

But I’m at the mercy of moods, and generally not circumstances.  There is not much reason why today feels so much better than yesterday — there’s even snow falling today.  I hate the fact that there is this unseen force within me that controls so much of how my day feels.

Mood issues run in my family.  What about Nat.  ?  How would I know?  I suspect that any of Nat’s neurological/emotional fragility comes from me, although many would point to Ned as the origin, because he is such a geek.  Someone just asked me the other day if more Jews have autism than other groups — huh?  I barely knew what to do with that one, any more than when someone tells me that autistic people are more beautiful than everyone else.

For a lot of Nat’s life, I suspected that he could benefit from therapy.  I mean traditional psychotherapy, once a week, connect-and-cry with a paid professional kind of therapy.  But anytime I’ve gone looking for such a person, the Behavioral Bias crops up.  As soon as the professional finds out that Nat is autistic, they want to do behavioral therapy on him.  They want to analyze his behavior. Only once did I find a psychotherapist who treated autistic guys like Nat, but he was put off by my honest admission that Nat sometimes, well, you know, sometimes he would become so upset that he could become aggressive.  Hmmm, said this well-thought-of professional.  Have you ever considered behavioral therapy for him?

But it’s the aggression and anger that made me want to get him psychotherapy!!!  Maybe he just needed to connect with someone who would help show him that he was okay, and that if he wanted to change, he could.

Blah.  Of course Nat has had behavioral therapy.  That’s been his primary mode of learning.  That, and one-to-one connection and persistence.  But I wanted him to have the other kind of therapy, talk therapy which has helped me and so many others so much.  Even though he does not talk much.  Surely that can’t be the issue:  don’t non-verbal people get psychotherapy sometimes?  If they don’t, why not?

Why can’t psychotherapy be considered for someone who is autistic and can’t really speak?  If one is human, and has outbursts or mood swings, then shouldn’t they be offered the same kind of treatment as anyone else, autistic or not?  It’s just like what happens with the autistic folks who have GI issues; so few people thought to check into tummy aches, etc.  Again, the first rule was always to treat anger, outbursts, etc., as behavior issues.

The assumptions we start with make all the difference.  You might be starting with the assumption that a person is autistic and that means 1) he doesn’t experience emotion the way we do; 2) he doesn’t care about others’ states of minds so he can lash out if he wants to; 3) he is working with an inferior/disordered neurology and so he needs us to wrench him into proper shape.  He needs a black-and-white way of dealing with things because he simply does not see gray areas.  Therefore, you must use behavior modification.

But if your assumptions are 1) He doesn’t appear to react the way we do; and 2) that might be because he does not understand enough about human interaction because of his language issues; and that 3) he feels the same things everyone else does, and probably wants the same things, then you might realize that there damned well should be a way that he could have psychotherapy for his outbursts/mood swings.

Basically, if you start from the standpoint that he is just a person, and as mysterious as any other person, with the added difficulty of language barriers, then your mission — to help support him, help him understand you and himself, and then, to connect with him — that task has just become a whole lot easier.

The problem may be as much with the biases of the professionals as with the autistic person himself.

The other day I had a call from the nurse at Nat’s school, asking me where were all the consent forms, the medical forms, the annual updating of Nat’s important info.  I had put that packet into his backpack, but apparently it never got to her.  This is because I did not tell anyone but Nat about that stuff, and so the information was left with him.  I guess I have my fantasies where Nat would actually remember on Monday — where he’d see the packet in his backpack and remember what I said about giving it to his teacher — and fish it out and hand it over.

This didn’t happen; what then went through his head when his hand brushed the packet as he pulled other things out of his backpack?

I will never know what went through his head, or what goes through his head.  I’ll never know what goes through anyone’s head, though.  But somehow with Nat it feels kind of painful.  Not always, just sometimes.  I suppose those wistful, grieving feelings will never quite disappear entirely.  I have to admit — me, the big champion of the Don’t Compare Doctrine — I look at Max and Ben and the entire tangible worlds they’ve created for themselves, quirky though they are, and I feel like, “God damnit, what Nat could have had, too!”  Here Max and now Ben have a few circles of friends, they make their own plans, they have their projects at home:  Ben is designing an adventure game using software called RPG Maker, about a boy wending his way through the Netherworlds, from Hell to Heaven.  It’s partly based on Dante’s Inferno (he’s actually read parts of it, at age 12), and on Celtic folklore (a favorite teacher did a unit on that last year).  He also draws dreamy, moody landscapes with vague threats on the horizon, that he posts on an art forum.  And he plays Little Big Planet II a lot, with Max or various friends.

Max is rendering the game Riven (part of the great Myst game series) into new software that — I think — will make it more 3D than it has been, and will also allow you to actually be in the game.  You can see its progress on this website.  Max also works 30 hours a week for this company, and of course has a serious relationship with Hannah, his girlfriend from high school.  He’s going to go to the Tisch School at NYU in the fall — this is his gap year.

So then there’s Nat.  People ask me, “How’s Nat?”  And I always try to think of what Nat, himself, is up to, rather than tell them about what I’m doing for him.  It is very tough.  I have to shift myself into NatMode, which is where I am released from the standards of the MainWorld, and I enter a realm of suspended judgment, where just about anything goes.  NatMode is comparable to when the boys were babies — I’m not saying Nat is like a baby, though — when the stuff you report on is milestones, rather than expressions of their personalities.  I used to crow about how “Maxie is walking at 10 months!”  Or “Nat first crawled at 7 months!”  Or “Benj is talking already! (but totally on his own terms…)

When people ask me about Nat, I think in blocks of how he spends his day.  There’s work:  Papa Gino’s, making boxes and delivering door coupons in the neighborhoods around the restaurant; serving lunch in his school cafeteria, that kind of thing.  He loves it, I say.  That is true.  When you ask him where he works, he can answer in a snap:  “PaGinos;” and “Make boxes.”  No thinking necessary; the words are right there.

I tell people he loves basketball and knows how to shoot baskets.  He loves the excitement of the crowd at the tournaments.  Gym noise does not bother him.  I tell people he is helpful at both of his homes — laundry, dishwasher, vacuuming — and so well-behaved and centered.  I like using words like “centered” rather than “well-behaved” because I like to get people thinking of him as an adult who is capable of things they may not be.  For instance, I don’t know if I’d describe myself as “centered;” active, yes, but centered?  Not that often.  I am able to focus on the boys, no problem, but most other things in my life take an effort of concentration and discipline.

But there, I guess I have given a list of Nat’s world just as I have given you a list of Max and Ben’s worlds.  Why do I feel differently about those lists?  I’m proud of all three.  I guess it’s just that sometimes, I’d like to see Nat’s list, how it would have compared to Max and Ben’s.  If I spell it out in words, the pride is no different.  The bragging, the crowing, is all there for all three of them.  But what?  What is it that’s different in Nat’s case?  Is it that he isn’t really given a choice in his world?  That everything he does was someone else’s idea.  I don’t know.   But in my quest to fully embrace disability, I see that I still have some work to do in terms of letting go completely the notion that This is Not the Life I Was Supposed To Have.

A new era has begun for me.  All the past years I’ve been going to these state hearings on proposed cuts to special education in Massachusetts.  I’ve been one parent out of many parents, professionals, and students protesting cuts to programs that have never been fully funded to begin with.  But today I testified at a state hearing on Massachusetts’ proposed cuts to the Adult Foster Care program (AFC), the first time I’ve spoken as a parent on Nat’s behalf — for his adulthood.

I’ve written recently about the AFC program, which is funded through MassHealth and Medicaid, about how this program is part of the new movement to keep those with disabilities in their communities and homes, rather than sending them to nursing homes and institutions.  The part AFC plays is that it provides a small stipend to a caregiver (usually a parent, a foster parent, or a hired caregiver) to live in the home of the disabled person 24 hours, 7 days a week.  For a Level I case, someone who needs prompts to do almost anything and who needs supervision at all times (Nat is a Level I), the stipend is about $9,000 a year, which when broken down comes to $2.07 an hour.  This is the program that Massachusetts feels it must make a 6.2% cut to.

Have you ever tried to hire someone for $2.07 an hour?  I couldn’t even get my neighbor’s 5th grader to water my plants for that.  Imagine trying to hire someone professional enough to care for Nat in all his glory for that pittance.  Or, consider that this money would be to substitute for my salary as an adjunct professor.  Or, if I could not care for Nat, then this stipend would be for Ned, currently a software engineer supporting a family of five, who would have to leave his job or reduce his hours.  And we are people who are doing well enough, with savings, etc.  What are the people who work two jobs to survive supposed to do to support their disabled loved ones?

Institutions, you may say.  Well, you would be totally wrong.  Speaker after speaker from different agencies that administer AFC programs — about 120 people filled that room — reported the comparative figures, of nursing home care vs. AFC.  Basically, nursing home and institutional care cost twice as much per person as the AFC program.  Institutions are becoming a thing of the past, a former era of relegating of individuals with disabilities to the margins, the dingy basement rooms, the closets, the attics of the world. Custom Cabinets Houston will offer beautiful creative solutions and make any place brighter and more comfortable.

Damnit, I am not going to let that happen to Nat and his friends.  22 years of hard work in school, all those resources and teachers’ energy going into helping him become a person in the world, an individual in his own right, someone who works, who is a team player, and who brightens people’s days with his sunny face.  Someone who, prior to his intensive residential education, was at times so destabilized by his environment that he became violent.  This created an unhealthy home for my family, including Nat, and especially Ben, my youngest.  Imagine growing up, tiny toddler with an out-of-control brother that even your all powerful parents could do nothing about.  What does that do to a person’s view of the world, ability to trust, to manage fear?

What does it do for Nat, who is also a person who deserves to survive in this world when I am gone.  Families with disabled loved ones need support, or they stand to fall apart.  And then who cares for them, who picks up the pieces?  Get a good look at some of the street people you see, wandering around dirty and uncared for, talking to themselves…  what is their story?  What is their diagnosis, do you think?

I told these state officials that parents of 21 year olds like me are terrified of what comes next.  They had a support system in public education, professionals to help and educate, however imperfect it was.  Adult services should not feel like you are on the edge of a terrible precipice.  A program like AFC — as little money as it is — still allows people to continue making progress in their homes or in Nat’s case, with other roommates sharing the one caregiver in an apartment of their own.  I told these folks:  “Don’t do this.  It is penny foolish and pound cruel.”

Nathaniel means “gift of God,” from the Hebrew Natan-El.

About 20 minutes ago I got the call that every mother dreads most:  “We can’t find Nat at this moment.”  I was out with my friend Lisa and I didn’t know what to do first.  I called Ned at home.  He hadn’t heard this.  He got into the car immediately to drive to where the social group had been.

My friend put me into a cab and I called the social group leader back.  “YOU HAVE TO BE FUCKING KIDDING ME”  I screamed.  “Where is he?”  The wine I’d had was going to come right up.  My stomach lurched.  My phone beeped.  My friend was asking what was happening.  I called Ned, and he was on his way.

Where was Nat?  They said that they got distracted for a moment when one of the social group kids got picked up by her dad to go home.  They did a head count and it was only three.  Nat was gone.

I was sick to my stomach, screaming in the cab.   He’s gone.  He’s gone?  What are the chances you can find a young autistic man in a crowded hockey stadium?  He’s gone.  This is the worst thing that could happen to a person.  If someone tells you that autism is the worst thing that could happen to a child, they don’t know anything.  My darling, my Nat.

And the weird thing was, when I dropped him off this evening, the group leader seemed kind of — tentative.  Young.  Nat was doing a wide circuit around him and I yelled out twice, “Nat, stay with the group!”  I looked back to see where Nat was, and he was with the group, so I let him go, but there was a small tiny voice that was wondering… But he’s been doing this for years, don’t be silly, Susan.

My phone rings a few seconds later, “We have Nat.  We have him.  He’s okay.”

“Where was he?  He’s okay?”

“We are not sure where he was but I had checked all the bathrooms and had the entire stadium locked down.  He’s okay.”

She put him on the phone.  “Hi,” he said.  It was my darling’s voice.   God has now given me this gift, twice.