Susan Senator

I’ve been doing my Swami gig live these days and recently sat down with a woman I’ve known forever (forever in autism years means since diagnosis). She is stuck between a rock and a hard place. Her son is currently home and should be (would like to be) living elsewhere. He is a Priority One, like Nat, and so his situation is difficult. His mom took him out because the placement was inappropriate. The match was terrible. The needs of the young men were completely different. I’m pretty sure that this was a vacant slot offered by the Department of Developmental Services and they found their round peg to go into that square hole and just hoped for the best.

There are so many parents like her, like us, coming up through the schools, who have learned how to fight, just as the parents fought before the Federal law, IDEA was passed. Parents have always had to fight for their disabled kids. It’s a sad fact, but it does make a creepy kind of sense. The state bureaucracy figures that if your need is bad enough, you will fight for it. Even if this is true for some, it is not true for others. Some have such a need for supports that they are too overwhelmed — because of their child’s needs. Some work long hours. Some don’t speak the language. Some don’t know what to do, what is even wrong, who to call.

How can this problem be solved? I don’t know. The piece I do know is the advocacy piece. No one is going to give anything away unless they are a charitable foundation and I’m pretty sure that the state government is not. And the line that we are given — that the system is abused by so many — I just refuse to believe it. My guess is that many more people don’t know how to work the system than do.  Even the most highly educated, well-resourced parents I meet as the Swami do not know what they should do when to prepare their autistic child for adulthood.

Here are my rules of thumb:

1) Assume that no one knows you or cares about your kid. Get angry. Then get over it.

2) When you have a good hour, call your state Department of Developmental Services, or Department of Rehabilitation Services. One of the Human Service agencies in your state government. Stay on that phone.  Get names of those you are talking to.

3) Learn the name, number, and email of your own liaison as well as your regional director.

4) Send an introductory email to the liaison and cc the regional director.  Tell them you will follow up in one week.

5) Rinse and repeat.

You’ve got to call. That is the first and foremost task on your plate. Make your contact, and show them who you are.  Think like a Who. We are here, we are here, we are HERE!

Around 14 years ago we were invited to a holiday dinner with the family of one of Max’s friends. I think I had just had Benj, because I had that new baby feeling of not quite remembering everything else I was supposed to remember. This was a gathering of several families; I remember that the hosts had a very long table. The dining room and all the front rooms had large Victorian-style low windows that faced the sunny street. The kitchen was right off the dining room and had a door to the back yard, which wasn’t a yard at all because this was a first floor apartment in a row of attached brick buildings. The apartment building was on a side street to a busier street.

We were about to sit down at the table when in through the dining room window climbed Nat.  I looked up at him and felt like I’d swallowed a wet frog. My gut knew before my brain what had happened. Somehow Nat had escaped from the apartment and we had not even realized it. My guess was that he’d gone through that kitchen back door, because we would have seen him if he’d gone out the front. Do I remember faintly, darkly, a back door slamming, or is that my mind filling in an old obscure memory?

Everyone must have noticed, but I don’t remember us all talking about it then. I think we even stayed for the dinner, rather than going home and sitting around in shock. What I do remember is that awful feeling of being in two places at once: the Me at the dinner party, trying to participate, smile, and be a good guest; and the Me stuck in the previous hour, tasting the terrible thoughts, “what if…?” Ned and I tried piecing it together later on. Nat must have opened the back door of the kitchen and perhaps it closed on him and locked him out. Even back then he was not an “eloper.” (I don’t like to use the term “elope” because that has the exciting, romantic connotation of people running away together to get married. No, there is nothing exciting or romantic about the autistic children who disappear from their homes, attracted to a nearby body of water or some other fixation.) This was one terrible trait common in autism that we did not have to contend with. Except that night. Still I think of it as innocent, unintentional. As if all those other autistic children who run away mean to do it. As if they are not victims of impulse and circumstance, too?

We imagined that Nat, being presented with the locked door, had made his way through the backyard, and all the way around the backs of all those connected buildings, until he found himself on the street. He may have even gone the opposite direction and wandered onto the busier street. Yet he made his way back to the front of the apartment, and found the way in through the window. I don’t know what was in his mind, whether he panicked or simply made his way back to us, or both. He was not upset when he climbed back into that dining room. He was about 10, and this was his most impulsive age so far. To this day we both marvel and shudder at this memory, because of what did happen and because of what could have happened.

The families of Mikeala Lynch and Owen Black were not lucky. Their children wandered and died because of it. There is so little we know about why these children run away . I have no words of wisdom here; I guess we are still in the phase of trying to raise awareness via Sunday Stillwell’s blog, in the hope that someday soon there will be an answer, a way to protect our children from fatal impulses. Today we can only grieve.

I still think about It sometimes. My brain cells loop alot, rather than moving forward and outward. But I wonder if I get this out on “paper” if it will make the shitty thought go away.

The other day I was speeding down a hill on my bike — which is when I think of everything and nothing — and I realized that I’ve rarely written about a the question I first asked Dr. E, the developmental pediatrician who first evaluated Nat, 21 years ago. He delivered the diagnosis, “PDD, under the Autism Umbrella,” (almost charming, calling it the Autism Umbrella, as if it can shade you or keep you dry from unpleasant things). I was not stunned. I remember feeling as if I were in a movie or something — at a distance. I experienced the news in levels of my consciousness. The rational, intellectual part of me said, “Yes, yes, of course. That makes sense.” The fearful animal side of me thought, “What? What do I do? What should I do?” And the mother’s heart of me asked, “What did I do?”

I asked the doctor if I had caused Nat’s autism (I have written about this) because I literally did not know what caused autism. But he told me at least what did not cause autism: a cold mother.  He said it resided in Nat’s neurology. Later I learned that his brain cells — Pukinje cells? — were growing in clumps and not tributaries. Back then I thought, “Can I please just cut some of those cells out of my head– surely I don’t need to be this non-autistic, I could handle it — and graft them into Nat’s?

But deeper and more mired in shit was the thought: What caused this?

1) Was it because we chipped away at lead paint in our dining room while I was pregnant with him?

2) Was it because our car back then had a rotten egg smell of exhaust? Was there something toxic I was exposing Fetal Nat to?

3) It was a shitty labor and delivery, from the first. A ton of Pitocin. They go back and forth about that one. Or how about the fact that the epidural was too strong and I could not feel how hard to push?  I was pushing him out for three fucking hours? This is the one that reduces me to animal anger, because this one is not my fault. That fucking doctor knew the baby was in distress. He took blood out of the emerging Nat head and could not even wait for the elevator to run to have it looked at. And for what? What was he looking for? Low oxygen? Why even wait? Do a Goddam caesarean, Asshole!!!!

4) Was it because I was depressed in his earliest days? Did I withhold love because he seemed so fragile, I didn’t want to lose him? Every time I looked at him my heart twinged, pinched.  No, this one counts as Refrigerator Mother which we know is wrong.

5) Was it the shots? No, that has been disproven, but sometimes I fear it anyway. It makes a horrible kind of sense. But no, it has been disproven.

6) A top-rated Boston hospital specialist told me that Ned and I are genetic land mines for autism because on my side is all the depression, OCD, and anxiety. On Ned’s side are the geeks and nerds. So actually, I should not give Nat some of my brain cells, he’s probably happier with his own.

Ned says, “You will never know the answer. So you should not think about it.

But sometimes I do, because I want to know who to be angry at.

I’ve been spending a lot of time with Nat — not unusual — and everything’s been going pretty well. But there are a lot of moments where I have to sigh and remind myself “this is the disability.” Meaning, he is limited by his autism in certain ways. Meaning he can’t do what I want him to do. But I don’t know if he feels his limitations. If my expectations are too high, is that his fault?

I’m thinking back to our lunch the other day, in a nice restaurant. Apart from our deciding what to eat, we did not really talk to each other. Sure, I told him to put his napkin on his lap and to take my french fries, but there was no conversation. I have to be quiet when I’m with him, and I don’t enjoy that. But again, shouldn’t I tell myself that is how he is, rather than think how sad it is that he is disabled and can’t talk much. When will I be able to make the final jump into seeing him as whole and unbroken?

If that is true, however, then why do we call it a disability, a disorder? How do we define it? Perhaps instead of the connotation of disability being about limitations and something being wrong with you, it should be more about what is really hard for you to do? Maybe disability is about an extreme difficulty with doing certain things that the majority (the non-disabled) take for granted? So I don’t mean my difficulty running three miles because my hip joints are screwed up. I don’t have a disability in the hips. But further along the line of inability to run three miles, one would meet a mobile disability.  Where is that dividing line?

Also, I wonder about disease vs. disability. Once in a while people refer to autism as a disease. I bristle at that. But then how do the people with cancer feel when others say, “thank God it’s not cancer.”

If some parents feel like, “Oh, shit, it’s autism,” is that understandable, or a put-down? Many of the high-functioning autistics and Aspies I know are horribly offended by the “Autism sucks” mentality. That’s because they either don’t see autism as a disability but just a difference, even a positive difference; or it’s because they see autism as a disability and they’ve accepted the fact that there are things they cannot do or understand. They don’t feel sad about it, they don’t feel broken or less-than.

I guess it depends on whether you see disability as a negative or as just another aspect of you. I think we probably have to make room for both — and there are probably even more viewpoints — but then we have to expect friction and factions within the community.

To me, most of the time, it’s not really important anymore what autism is (good or bad or just something). It’s what happens when autism meets the world. Nat being with me can be experienced happy or sad, depending on the circumstances. With his pediatrician, I am over-the-top proud of how much he can do, how much he’s grown. With his new adult primary care physician, I felt awkward about how much he could not do, and wondered how the heck such appointments can happen when the caregiver cannot translate or be a proper liaison?  Or, when I was in the restaurant with Nat, I thought of asking if he needed the men’s room. But I saw that it was one of those with stalls, urinals, etc., and of course the bigger stall for “the disabled.” But what there also needs to be is the single room bathroom, for those who do not understand the subtle bathroom behaviors. For the times when you have a caregiver of one gender and a client of the other.

The world needs to be told again and again what reality is for some. How a little change can make all the difference between able and not able. I guess that’s why my definition of disability shifts: it depends on the circumstances. If the rest of the world accommodates without judgement, without eye-rolling, and without having to go to the Supreme Court, then maybe we’d make some headway in viewing disability as a difference, the way the Self-Accepting Autistics and Aspies do.

I took Nat to an adult primary care physician today — my own — for his annual checkup. We have loved our pediatrician for almost 20 years. She grew up with us.  I learned from her all about childcare and she learned from me about autism care.

I thought that because Nat is now 23, he should be going to a doctor for adults. My doctor is a lovely man whom Ned and I both see and have for years, and I knew he’d be deft at handling an appointment with Nat. Now I know that using the words “deft” and “handling” implies that Nat is difficult at the doctor’s. No, far from it. He is a very compliant patient. The problem is that he is too compliant. He always answers “yes.”

It was quite an awkward problem, explaining to the doctor right in front of Nat that sometimes Nat does not answer accurately. What I said was, “Nat, you sometimes have a hard time answering some questions,” to which he replied — of course — “yes.” But that interaction alone told my doctor a lot. God bless the man, I watched him look at Nat with each question, then subtly slide his eyes to me, and record my answer. His eyes were inquisitive, not at all frustrated or impatient. No judgements.

Why should I expect frustration or impatience or judgements with a medical professional? With anyone for that matter? Because I have lived on the planet for 50 years and I know that the speed of people and communication is so fast. There are so many things that need to get done in this world, that even the kindest of us sometimes must bulldoze the slower and struggling. Today, this did not happen, because my doctor is very respectful and because well, we were paying for his time, after all.

I realized, as I watched the doctor examine Nat, and figure out about him, that it is an incredibly hard thing to receive good medical care if you have a communication and cognitive deficit. You depend on the others to decipher, describe, and decode. The human body can reveal some of its mysteries, but certainly not all. You can’t shine a little penlight into the brain to check for bad headaches. You can’t see cancer in a stomach without a huge intrusive test.  You can’t detect pain in someone else’s joints. No one does MRIs at a routine check-up, but sometimes I wonder how can we not with guys like Nat? What I’m saying is not new to many autism parents, and autistics themselves, I would bet. The fact that we cannot know for certain how our developmentally delayed loved one is feeling is nothing short of torture. And what is it like for Nat himself?

I had prepared Nat in the usual way for this exam: “This will be a new doctor. But he will examine you just like Dr. R does. Listen to your heart. Take your blood pressure. Weigh you on the scale…” And smiley Nat was just as smiley as 18-month-old Nat was getting his MMR vaccine in 1991. I remember how the doctor said, “Oh, you’re still smiling at me!” after the shot was over.  (Sometimes, even though that infamous vaccine has been exonerated, this story still makes me a little sad. I will leave it to everyone else to interpret that.) Dr. L seemed particularly relieved to finally move to the plain old examining part of the appointment, rather than the Q and A about Nat’s health in general. But even here, Nat did not understand what was wanted of him. “Deep breaths,” the doctor said. “ho ho ho,” Nat kept saying. Perhaps that was what they do in yoga with him? Does he even take yoga? “Swallow,” the doctor said. Nat just kept mushing around his mouth. “Look straight ahead,” the doctor said. Nat would look very earnestly right at the doctor. D’oh!

Nat usually does better than this at exams but I realize that he was probably thrown off by the newness of the experience: this doctor, this office, etc. I felt a little sad about just how much comprehension was missing on both sides — Nat and the doctor’s. Because Dr. R, the pediatrician, has seen Nat grow up and improve in so many ways, somehow the exam always feels like a triumph, a cause for celebration. At the end of this one, I wanted to lie down. Not because anyone had failed, but because communication is just so tough for Nat, and yet so important.

But I am certain that this was a success, nevertheless. When I asked Dr. L if I could also bring Max into his (already full) practice, he said, without hesitation,”Oh, sure.” I assured him that Max was “easier,” and then felt very ashamed of myself for that. But what I meant was, no forms for Max, and pretty forthright conversation. No judgement. He then sat down with the 10-page sheath of forms the DDS requires him to fill out for Nat, and very graciously joked that we must be so bored waiting for him to sign all these. No, boredom was not what I was feeling.

My column for the “Cognoscenti” blog on WBUR (Boston’s NPR affiliate) is about mental illness, social stigma, and evil.

I am in love with Nat’s Day Program provider, ASA (Autism Services Association). I went to their 50 year celebration today, and I was surrounded by ASA clients and staff. I also was sitting next to my old friend Margaret Bauman, who was one of the speakers (along with ASA Founding Parent Barbara Cutler and Martha Zeigler, two other Autism/Intellectual Disability Community Glitterati).

When I walked into the chaotic, bright room, my eyes connected with Nat’s immediately. How does that happen? It’s like our bodies know the other is in the room before our minds! I sat down next to his lovely and lively job coach, Michele. She told me how great a worker Nat is. Then Chuckie joined us, another ASA client. Chuckie talked to me nonstop; I had to tell him a few times that we should listen to the speaker, but finally I gave up and just chatted with him. Mostly he told me about all the things he was proud of (his new cap, his work award, his name being called, and his sister). Sometimes Jimmy from the next table tried to poke Chuckie, but we were all able to handle it. Chuckie was pretty good at self-advocacy. He would tell Jimmy to stop. He would tell me what was going on. And then he would call over any of the very animated staff who would help out. I like the way the staff people interact with the clients: sort of a mixture of camp counselor, friend, and authority figure. I think it was perfect: dignified yet also at a simple and straightforward level that the clients, mostly autistic, intellectually or developmentally delayed, could understand. This crowd of people was pretty intensely disabled. A lot of rocking, shouting, humming, and a good deal of the language around me was labored. I really could understand most of what was going on, because the clients (like Chuckie and Jimmy) were so welcoming of me, and not at all annoyed that I had to keep asking them to repeat themselves. Usually, I find that if I just relax and settle in with the person, catch his eyes, maybe read lips, I can get what’s going on. It’s really not rocket science.

Nat sat very quietly. Dr. Bauman said again and again how she could not get over how independent and composed he was. And handsome! (Nat does not have to work hard at handsome at all. That’s one thing that comes easily to him –that, and charm. I am not at all biased, even though I am his mother…) I’m not sure what he could hear or get out of today’s program, but I know he loved having his name called, and collecting his award as an excellent and committed employee. He came back to his seat with the certificate and a chocolate bar, and he looked at me for permission to eat it. In that sense, I am still his go-to person for learning the ropes. Although I want him to continue to connect and bond with others out in the world, I am so pleased that I’m his Mommy, The Great and Powerful.

I had a chance to catch up with Dr. Bauman and I asked her if she thought that the next generation of people on the spectrum were going to be different from Nat’s fellow ASA clients. She said, “I think what is here today is really different from when I was a resident. Back then, so many of these guys would not even be called autistic; they were ‘mentally retarded,’ or had ‘childhood schizophrenia,’ or whatever they were calling it at the time.” She felt that they had come such a long way from that era, because of public education and early childhood services. Then of course I had to put in a plug for the late developers in the autism population: “And you know, some of these guys bloom later in life, and then they have no school to attend. Nat really blossomed after 17.” And of course she did know that. She said, [I'm paraphrasing] “Not that they’re necessarily ever going to cure this, but there are going to be more and more types found, and we will also then know how to treat each type.”

With the current autism paradigm, you get the feeling of being in a simmering stew. There are all these rich ingredients floating around –research, studies, theories, homespun wisdom — and each thing is infusing everything else in there. The surface is bubbling, but it is just not ready. But soon, soon. We will have our answers as to best practices and we will have our programs that are worthy. We will then be able to do even better by these people.  For as great, humane, and creative as ASA is — and it is, I say that a year and a half later –  there is always more that can happen. Specialized community college programs, for starters. Greater independent living training. A better awareness of resources and funding streams out there, so people can maximize what the system has to offer. Someday we will feast, but for now, all we can do is stir the pot.

So Nat was hurt yesterday by one of his roommates. The roommate had had a meltdown and punched Nat in the chest and also hit the staff person and the other roommate. I was upset about this, especially after hearing that they had to turn around and go home right away. This means they did not get to go to their new friends’ group home.

I gnashed my teeth and felt my anger bouncing around inside my belly, aiming to get out. But I knew I had to control it. My mantra in the end is, “They are Priority One for a reason.” Meaning, the Department of Developmental Services only grants Priority One status and funding to people who are considered very involved with their disability. Nat is pretty wrapped up into his autism. His roommate is, too.

But it does make me feel the limitations of this living situation. When I heard about this I wanted to yank him out, just like in the school days. I am always quick to react and act; I’m only now learning that I don’t have to act right away about things that upset me. So what I did was to call Nat and get a sense of how he was doing. He was okay-ish. His voice was higher-pitched than usual and kind of full. But sometimes he sounds like that when he is laughing. So who knows? Goddammit I wish there were more clarity with this disability. It is the one thing that torments me, the not knowing how he is feeling. The way I have to guess, intuit. Yes, sure, I do a good job tuning into Nat, but I really truly wish I could be certain sometimes.

Luckily, Nat has some excellent staff at his house. John especially. John wrote me that he sat with Nat for most of the evening to guage how he was feeling. He is also very tuned into Nat. He calls Nat his “little brother” even though Nat is probably only a year younger than him. I hear a lot about how we should not infantilize our guys but this is not that. This is an expression of John’s fondness for Nat, and how much he identifies with him. How protective he feels of him. How like family, too.

Nat and the roommates are so well cared for that in the end we do not have to get really worried and upset over the day-to-day problems. Nevertheless, I called and spoke to Nat myself. I reassured him that his roommate was sorry about the punch, and that he would not do it again. How do I know that? I don’t, but I hope. Nat kept saying, “yes,” to everything. Eventually I said, “Do you want me to come over there to be with you?” And he said, “No.” I asked again, reframing it differently in order to be sure I was getting an accurate response. Again he said, “No,” and in fact added that he wanted me to stay in my house. I started to repeat this, to double-check, and suddenly he said, “NOoo,” and then, “Love you, bye.”

He rarely says “love you,” maybe never. I think he has said, “I love you,” previously, but I think it was prompted by staff.  This “love you” was not. So, Nat had generalized something I say to him each time we speak on the phone, and he had chosen to slide it in right when he was basically telling me he didn’t need me at this moment. He was looking out for me, as I was for him.

Next time people say that autistic people don’t really care about others, punch them in the chest.

I wish I knew, I wish I knew

What makes me me what makes you you. — Cat Stevens

Yesterday I was, of course, riding a bike (stationary this time, because it was raining) and Nat’s and my song came on my shuffle. And there it was, all over again, my Nat feeling. Hits me full on, heart and core. A tender pain, sweet, really. I used to fear it, I used to think it meant bad stuff like I’m still grieving. I have said that for years, that the grieving never goes away. But this was different. Not grief. Sweet ache, delicious. I saw his baby head for a flash, blonde and Charlie-Brown round. And I thought, “Yes, it’s true, I have gotten so much out of that person.” Then I thought about how some would find that selfish and say, “He wasn’t put here so that you could learn from him.”

I never said Nat was “put here,” though his name does mean “gift of G*d” in Hebrew (Natan-El). But Ned and I gave him that name. There was no discussion. If it was going to be a boy, it would be Nathaniel. A girl would be Melissa.  That was that. Some would ask, “where did you guys get the idea to name him “Gift of God,” though, if not from some Other Source?” Yes, sure, that is a valid question. What makes something right, though? It was simply the right name at the right time.

And Nat is a gift for me. Getting to know Nat and loving him — first blindly and instinctively, mother animal-style, and then, learning his personality and soul, person-to-person — this has been a singular experience. Nat’s existence has shaped me, made me see the world, people, life, in a different way from Before Nat, irrevocably. And how do I now see the world? With compassion. With rachmunis. A knowledge that things are not exactly fragile, but soft. The ground below our feet shifts, there is no certainty. If we can live with that, we have learned a lot already. If we can find happiness given that, even better. That is what Nat has taught me so far.

The challenge is figuring out if it’s okay the way it is. One specific example of “is this okay?” centers on how much of Nat is the autism, how much is the self. In other words, what parts of Nat’s being were okay to put under the microscope and alter (the autism) and what parts were sacred.

Turns out it’s all sacred! But that doesn’t mean people can’t try to improve and change. Again, because of Nat, I have learned that we are the whole package, but because we are humans with the ability to reflect, we can change aspects of ourselves in order to be happier, to exist more successfully (successful, that is, pertaining to the soul’s achievement, not the wallet’s). So one of my jobs as Nat’s mother has been to help him be his best, most successful self. To help him not fear, to help him understand and finally, to love the world. And in being reflective in this manner for Nat’s sake, I had to learn about that very same thing. You can’t teach unless you understand.

I suppose what I’m trying to say is, my most cherished lesson has been that what makes me me and what makes you you is sacred. The world changes, our actions may be altered; we learn, we achieve — but our souls are just there, and we discover them. We lift our souls and our children’s souls out of the darkness, out of solitude and bring them into the light. Autism can make that more of a challenge. But we are not meant to be solitary and in the dark. So we live, stumble, reflect, and learn. And if we let it, our soul lights the way.

This is your chance to effect services for people with developmental disabilities!!  Go to the capwiz application here and contact your state rep about supporting and cosponsoring the DDS bills in the works! These bills would improve DDS funding for programs like Turning 22 and Salaries for Caregivers!  Here is my sample letter. Cut and paste it and put in the name of your disabled loved one!

April 12, 2013

[recipient address was inserted here]

Dear [recipient name was inserted here],

As the mother of a 23 year old with fairly severe autism, I am concerned
about adequate community-based services and supports for people with
developmental disabilities served through the Department of Developmental
Services (DDS).  There are many people waiting for services and we also
are concerned about potential cutbacks for staff working in the field who
are among the lowest paid in our Massachusetts workforce!

Please co-sponsor the following amendments by contacting the amendment
sponsor.  Thank you in advance for your consideration.

DDS, 5920-5000, Turning 22 Programs and Services:  lead sponsor Rep. Sean
Garballey. The proposed amendment of $2 million to help all of the
graduating High School Services who will need services upon graduation.
Total would then be $8 Million.

The Turning 22 program provides first year funding to special education
graduates for adult services. If funding is not available students go from
receiving special education to having no supports as adults. Some lose
jobs while others require residential services. Family members may have to
leave their jobs to address the lack of adult services for a family member
which may result in severe consequences for the family.

DDS, 5920-3000, Family Support/Respite Program, Sponsor Paul Brodeur.  The
Arc/ADDP/MFOFC are asking for $3 million more to serve another 2500 people
needing family support & respite. (House Ways and Means provided $2
million additional. More families seek family support and respite each
year, with increasing wave of people with autism and other developmental
disabilities, family in home support and therapies are most cost
effective. The supports assist families to maintain a balance. These
services also delay or avoid costly residential and emergency services.

DESE (DEPT. OF ELEMENTARY & SECONDARY EDUCATION)-DDS alternative education
program, 5948-0012 and 7061-0012, sponsor-Rep. Jen Benson. This is a
FAMILY PRESERVATION program which transfers money from DESE to DDS to
prevent residential school placement on a voluntary basis for families.
The Arc/ADDP/MFOFC request $1 Million more to address the need for and
additional 75 families in need of  services. In 2009 the account was at $8
Million and this increase brings it to $7.5 Million.

DDS Residential Account, 5920-2000, sponsor-Rep. Denise Garlick. This
Community Residential Services (5920-2000) is $14 Million below the
Governor’s (Gov) budget request. That request funded 50% of chapter 257
increased rates for this line item over three quarters. This amendment
will require the administration to provide a plan to the legislature in
September 2013 that outlines how it will meet 100% of funding of chapter
257 for all EOHHS programs covered by the law, including but not limited
to DDS, Early Intervention, MRC, Brain Injury, DPH and others.

Thank you again in advance- please co-sponsor these amendments.

Thank you,

Susan Senator

Here is a piece I wrote for WBUR/NPR’s Cognoscenti column, about my mother-in-law Eleanor – whom I now cherish.

Michael Weiner is a friend and mentor of mine. He is a special needs financial planner who knows pretty much everything families in transition and beyond 22 need to know about housing and work — particularly for people on the Spectrum. Here, with his permission, is a notice about his next monthly meeting for parents, held at the Newton, MA Jewish Community Center:

Our next meeting is scheduled for April 17 (Wed) at the JCC, 333 Nahanton St (Room 508), Newton, from 7:00 – 9:00 PM.

The topic of the meeting will be “WORK”.

For those of us who have children who are capable to work, with the appropriate support, we all realize how important this opportunity is.  As our children leave their academic programs, the activity of working can provide the foundation on which to build a fulfilling life.  To rob a phrase from Jim Cassetta (executive director of Work, Inc.), “work is the hub of the wheel”.  A simple statement with enormous benefits, but often elusive and can be challenging to provide these work opportunities for our children.

This meeting will be devoted to discussing how best to prepare our children, and ourselves, as it relates to these work opportunities.

We are fortunate to have two representatives from organizations who put an emphasis on work, and are both on the fore front of provider agencies who can work with us to try to create these vocational opportunities.  We all know there are more of our children who are seeking employment, than there is employment available.  However, with the support of DDS (and their “Work First” initiative), and combined with a joint effort of parents and support organizations, these opportunities are possible.

Our speakers will be:

Ms. Sharon Smith.  Sharon is the Senior VP and COO of Work, Inc., Dorchester.  This organization has been in existence for more than 40 yrs serving individuals, with all types of disabilities.  Today, they serve over 800 individuals, and provide vocational training and placement services.  They are New England’s leader in the Federal Ability One program.

Ms. Mary Ellen Cameron.  Mary Ellen is the Program Director of the Lifeworks, Inc. Supported Employment Center in Norwood. The foundation of this organization has been in existence for more than 50 yrs.  They offer a wide array of employment services, including competitive employment, group employment, and job training centers amongst their supports.  They have successfully placed hundreds of our children in community based employment.

Both Sharon and Mary Ellen are intimately familiar with today’s landscape, and how the agencies (primarily DDS and MassRehab) are approaching the immediate future as it relates to employment.

So, whether you have a child in the transitional age (less than 22), or who is post 22, you will benefit from participating in this discussion.

Please send me an e mail if you plan to attend so I can be sure there are adequate arrangements.  Thank you.

Lastly, on a personal note.  I serve on the board of the Federation for Children with Special Needs, and am the current Treasurer.  Our annual Gala is scheduled for May 3, 2013 at the Seaport Hotel, Boston, MA.  The Federation has supported, and continues to support, all our children.  Any support for this wonderful organization would be greatly appreciated.  Please consider attending the Gala, and if you are not able, a donation, in any amount, is appreciated.  Here is the link to the Gala event:  http://fcsn.org/gala/2013/index.php

Michael W. Weiner
Financial Advisor
Special Needs

Commonwealth Financial Group
101 Federal St. (Suite# 800)
Boston, MA 02110

617-312-5115 (Cell)
E Mail:   MichaelWWeiner@financialguide.com
www.commonwealthfinancialgroup.com

Nat had a strange rash today. I got the call from his caregiver, who also sent me photos of the rash via text. I immediately remembered the shingles Nat had a few years back. Shingles is an awful disease that is related to chicken pox. It hurts and hurts and it takes a while for it to clear up. I called my sister who is a pediatrician and sent her the photos. It was just a rash, she concluded. Thank God. Give Nat Benadryl, she told me.

The thing that bothers me is that when I called the house manager I was told that legally, the caregivers are not allowed to give Nat Benadryl without a doctor calling the pharmacy and signing off on it. What? I said, “Well, can I give it to him? I’m his legal guardian.” And his mother. So, of course I could do that, and even though Nat had just gone back to his home after spending the night here, they had to bring him back so that I could give him an antihistamine.

Makes sense, right? So riddle me this. What if Nat had — God forbid — been anaphylacting over something, and needed Benadryl? Would the staff have had to wait for all that red tape before helping him??  If so, then this is insane. The state purports to care about these guys like Nat, with this kind of overprotective shit, while still denying person after person funding and housing because the resources are too tight. The caregivers watch over Nat at night, give him meals, drive him around. We trust him in their cars, we trust him to their care. But there not allowed to administer Benadryl, for God’s sake?

Spare me this sanctimonious safeguarding, State of Massachusetts. Until you show me that you can take care of every vulnerable person — homeless children, impoverished elderly, destitute veterans, the disabled — then keep your sticky red tape off my kid.

Nat’s anxiety has returned. Or should I say, Nat is anxious these days? With someone who doesn’t have autism, I would say the latter. With Nat I say that his anxiety has returned, which gives away my own anxiety about what I used to call Nat’s “cycles.” I used to think of Nat’s psychological statein terms of the famous seven years of feast, seven years of famine. We would have periods — of 3-6 months usually — where Nat would try new things, answer questions, keep calm (not in the cliched British sense) and go with the flow of our whitewater family. Then, inexplicably, there would be another phase. Nat would stare out the windows at the streetlights and ask repeatedly for them to go off if they were on too late into the morning. Or he would watch Ned’s feet to make sure his shoelaces were tied. Or he would walk quickly about the dining room until Ben finally came in to have his breakfast.  Screaming, repeating questions ad infinitum, trying to get something out of us that probably did not exist. We did not know what caused it and we would try all those things that people tell you to try when your life goes out of control: (supplements, diets, regimens, etc.). I would get articles from well-meaning relatives that would be about scientists’ new optimism about mitigating the symptoms of autism. It would always annoy me. There’s really nothing new under the sun that I’m going to try for Nat. I’m sorry. I tried so much when he was younger. Looking for — what? a cure? a change? How do you measure progress if you don’t have a baseline?

Well, for the first time in years, as I said, Nat’s anxiety is back. Unlike those other years, I know why. Maybe I even knew why then but it was all so scary to me — having a kid who simply could not communicate pain, discomfort, anger, desire. He would jump up and down, screaming, biting his arm, hitting us, clawing us. There was no place to be that felt safe. Put him in his room and pull the door shut and hold fast to the doorknob for — a minute? How long was this supposed to last? How do you gain control. It was so fucking scary. You just watch, cry, or duck.

Nat is anxious because they have not yet moved into their group home — the new house, that is. Yet they had been told months ago that it would be “soon.” But unfortunate event after unfortunate event has prevented this from occurring. Now there has been a problem with the plot plan, the permits not being pulled, and various other P-based pain.  There have been no tantrums, no arm-biting, no screaming. But he is clearly anxious. Wide-eyed, hand wringing nervous.

Poor Nat. Oh my God. I want to comfort him but he will take no comfort. If I look at him empathically he says, “Noooo.”  What he needs is predictability, Goddammit, haven’t we covered this already? How can it be that his service provider has messed this up this badly? Of course, now that the parents have yelled and screamed a lot, there has been progress. They will be moving “soon!” Yay, soon.

Meanwhile Nat is running around like a squirrel asking with his eyes when his nervous living situation is going to smooth out again. And of course he looks at me the most. I am still Mommy The Great and Powerful. That melts my heart and scares the shit out of me. I am still the main one in his universe who really truly has got to keep it together. And we all know how stable I am.

Plus, even if I knew what to say to him, he’d probably still say, “noooo.” So I guess we are going to have to wait until the cycle changes back.

I got the the following article from Sunday Stilwell at Extreme Parenthood, and it really stirred up some stuff for me. We really have so many of these “odd souls” flying around these days. So many Nat-like guys in our stores, restaurants, streets, schools. We all know this, we encounter these people every day. We become friends with people solely because we share this experience, of taking care of someone who is Not Like Everyone Else. Not “normal.”

But with so many “not normal,” doesn’t that change what normal means? I guess that technically neurotypical, Developmentally On Time people are still in the majority. But the DD guys are so very visible, God bless them. Nat is so gloriously autistic, even when he is not flapping, not talking to himself, not walking fast. There is just something in his overly-alert, anxious-to-comprehend stare. His stance is uncertain and yet starkly evident against the blur of strangers.

Maybe that’s just my perception. But I have to look at it. And so I did. There he was trudging up High Street, his jeans a little too short to be stylish, no matter what I do to fight against his dressing disabled… please forgive me, but I know many of you know what I mean… with the huge CVS bag filled with 12 rolls of toilet paper. Like an old person, somehow. Two young woman walked purposefully downhill towards him, stepping adroitly out of his way. I heard snippets of their busy lives’ conversation, their competent, to-the-point words. They were roughly Nat’s age.

But today, before the sadness of missed potential descended fully, my own wider, open self kicked it out of my head.  You, Ms. Senator, are judging him. You are seeing him as inferior to them when you talk about missed potential. You are automatically assuming that normal is superior. That he is missing something, when truly he is existing on the same plane as them. Humans, humans, everywhere, each with a different set of neurons and experiences and synapses linked or not. One mind does not exist more fully, does it? We are all breathing the same air with our animal lungs, we are all evolved from apes and alive.

Yet my eyes can’t lie. There is sadness behind them anyway, and I suppose my words will not pat them away. The answer, then, is simply to go find Nat and give him a kiss.

Here’s a parody I came up with while riding my bike today. Inspired by budget difficulties for our state agencies under EOHHS (Executive Office of Health and Human Services), it’s called “Old Deval,” (our governor) and it is sung to the tune of “Old MacDonald had a farm.”

But first, here’s a glossary:

1) DDS = Department of Developmental Services  (under the aegis of EOHHS, along with Mass Rehabilitation and Mass Department of Mental Health)

2) ID = Intellectual Disability

3) Aspie = Person with Asperger’s

4) ASD = Autism Spectrum Disorder

And now, on with the song!

Old Deval had to fund E-O-H-H-S:

He had to fund the DDS …

E-O-H-H-S

With some ID her and some Aspies there

Here ASD, there ASD, everywhere ASD

Old Deval had to fund E-O-H-H-S

 

He had to fund Mass Rehab…

E-O-H-H-S

With no job coach here and no support staff there

Here a cut, there a cut

Everywhere the budget’s cut

Old Deval had to fund E-O-H-H-S

He had to fund Mental Health…

E-O-H-H-S

With some stigma here, and no nurse care

Where’s the home, nowhere’s the home

So that is why the street’s their home,

no job coach here, no support staff there

Here a cut, there a cut, everywhere the budget’s cut

ID here and Aspies there

Here ASD, there ASD there, Everyone’s got ASD

Old Deval had to fund… E-O-H-H-S!

Once again, my friend and mentor Tim Shriver (Chair of Special Olympics) hits one out of the park, with this brilliant Washington Post oped!

You can read my latest piece on autism and job training in Education Week, right here.

A few days ago, I dreamed Nat could speak– I mean, really talk, not just the hesitant monosyllabic speech he uses. In the dream, I was riding in an elevator with Nat and a pretty blonde woman, in her early forties. She sees him, 23 years old and sucking his thumb, but doesn’t realize he is intellectually disabled. She says flirtatiously, “You must be a movie star to be doing that in public like that.”

I answer for him, as I always do, brusquely defensive and self-righteous: “Actually, he is autistic.” But then – Nat takes out his thumb and says, nonchalantly, as if he could talk all along: “Actually I do come from a long line of theater people.”

I awoke gradually, uncertain that this was a dream, but each moment of dawning clarity brought more pain. It wasn’t just Nat’s talking that blew me away, it was the level of self-awareness and subtlety. I hadn’t realized, after all these years, that I still wanted that so desperately. I think this flicker of desire must have come from a recent decision his doctor had made, to reduce Nat’s medication. I had agreed that we should try this, because Nat has been doing so well for so long. We reduced his meds around a year ago and found that even though he seemed more on edge, he also seemed to be able to answer us more often. And anyway, the goal had never been to have him medicated forever; it was just supposed to have been a “buffer” against aggression that started 13 years ago. I can never forget that horrible afternoon when he was 10 and he attacked me in the subway station, simply because we were going a different way home. I struggled to fend off his clawing hands while keeping hold of his baby brother and the stroller at the same time. I was desperate to calm him, to soothe him. Events like that became common, so we turned to serious neuroleptic medication to help him.

While the decision to medicate made sense back then, I have learned over time that so much of parenting Nat has been about a kind of letting go, of hanging back to see what could happen. After all, we learned how well he could ride a bike because we (accidentally) let him ride off around the block, out of our view. In a mixture of choking fear for what might happen, and a small soft certainty that he’d be okay, we ran after him, knowing we could not overtake him. We had to wait, hearts in our mouths, for his safe return around the corner. We didn’t really know for certain he could do it safely – and yet, didn’t we? Somehow, it was okay. He came barreling down the hill towards us with a devious smile that seemed to say, “I told you so.”

Taking Nat off his meds is a slower danger than a bike accident, but almost as much is at stake. Nat is living away from us, in a house with roommates and staff, taking care of himself in so many ways. He routinely makes meals, cleans, and decides how to spend his leisure time. He plays on a basketball team, and he works three days a week at a supermarket. I do not want to see this jeopardized by a return to outbursts and aggressive behavior. He could stand to lose so much. I dread the phone call from his day program or from the house staff, like what I used to get during his middle school days: “There’s been an incident…” It’s been peaceful for so long.

The fact is, though, that a less sedate Nat could mean a more alive Nat — alive in every sense of the word. He will likely feel more anxious simply because he will be more aware. He will experience noise and sensation more acutely. And yet, with some of that comforting haze lifted, he may see things more clearly. He might understand more. Isn’t it his right, as a human being, to take this chance?

I guess, in this season of audacious hope, I feel my own sort of optimism: that maybe Nat at 23 can indeed handle a new, raw but heightened perception. Maybe with greater perception will come better communication, a stronger connection to the world, and all that it brings – delightful or frightening. Because parents will do anything to help their children grow. Mine is a mother’s dearest hope; I have a mother’s dream.