Susan's Blog

Thursday, May 30, 2013

Tax Reform

There is a bipartisan website starting up (thanks to Reps Max Baucus and Dave Camp) that is seeking imput about tax reform, cuts, and spending. Go to the site and tell your story, make suggestions! Go to https://taxreform.gov/

Here is what I wrote. Feel free to plagiarize and pilfer, adding your own details. Just cut and paste my letter with your own situation and names!!

People like my son Nathaniel, who is 23 and has autism and intellectual and developmental disabilities want to live and work in the community and have access to services and support to make that happen.  Nat, whose autism is severe enough to give him a Priority One in our state’s Department of Developmental Services, actually works 3 days a week with supports. He pays taxes. He actually is beginning to earn enough to pay for part of his own transportation and job coach! (Using the IRWE program of Social Security, Impairment Related Work Expense). This is beyond my wildest dreams for him. He is on his way to independence *because* of government dollars. I am forever grateful to this country for such programs as Medicaid and SSI.

Tax and revenue policy should support adequate funding for these vital services and supports so that more people can move to greater independence.

Further cuts to non-defense discretionary programs and any cuts to Social Security, Medicaid, and Medicare should be avoided by ensuring that the government raises sufficient revenue to support critical programs.

Please reject policies that help only the most wealthy; and raise revenues in a progressive way without increasing poverty or income inequality.

There are reforms to the tax code that could be made without hurting people with intellectual and developmental disabilities. Medicaid can be modernized so that those dollars can be used towards community college programs that train people like my son how to work and live more independently, rather than languishing in Day Habilitations. Medicaid regulations need to be more flexible so that people with intellectual disabilities and autism can use Medicaid-funded programs that work towards getting them OUT of the government systems!!

Thank you for all you do for people like my son. –Susan Senator

Tuesday, May 21, 2013

Make Yourself Heard

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!

YOPP

Monday, May 20, 2013

What is Missing in the Autism Picture

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.

Sunday, May 19, 2013

Self-indulgent, self-hating, offensive blog post

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.

Disability, Disorder, Disease — Or Difference?

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.

Friday, May 17, 2013

Nat’s first visit to an adult primary care physician

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.

 

 

Tuesday, May 14, 2013

My Latest Column: Mental Illness, Social Stigma, and Evil

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

Monday, May 13, 2013

Dignity and the Day Program

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.

20130513_134328 copy

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.

Thursday, May 2, 2013

Empathy

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.