Time for Advocacy
Here is a message I’m passing on from the Arc of the US. If you are or have a disabled family member, you are likely going to have to use some of the services provided by our government. We need to protect and improve these services so that they are as efficient and helpful as possible. We want to see our tax dollars put to the best use. Our advocacy and oversight of social service agencies and Congress is the only way to make this happen, regardless of your political affiliations. Take a look at the plea for action/advocacy below.
**** to my readers: PLEASE DO NOT SEND ME NEGATIVE COMMENTS TO THIS POST. I DO NOT BEL...
Source: Susan's Blog - August 27, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Heart Burn
For Nat’s entire life I have worried about the fact that he cannot communicate well enough to tell me he is sick. Many autism parents face this and do not know what to do. These days I guess it is pretty common to take your child to a GI specialist and get a work up, because it does kind of seem like a lot of people in general are having gluten or other intolerances. We all know people with autism who are on some kind of special diet. Whether this is a scientifically proven solution or not to me the important thing is to get your child checked out as you would a non-autistic child. In other words, don’t assume ...
Source: Susan's Blog - August 15, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Managing
Here we are at the Cape for the 23d summer as a family. My sons are 23, 21, and 15. And I am wondering for the first time if we are maybe getting too old for this particular vacation. It takes so much energy keeping everyone happy. I know that I should not feel so responsible for everyone’s happiness but I can’t find another way to be. I love them all so much and I want us all to be having fun. But Nat wakes up at 5 or 5:30, and goes to the bathroom four times in a row, and flushes and stomps out of the bathroom each time, doesn’t wash his hands, and shuts (slams) the bedroom door. He does not mean to mak...
Source: Susan's Blog - August 13, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Presume competence? Or be parental?
What must it be like to so frequently be told what to do and how to do it? It’s one thing when you’re a child and everyone around you is pretty much older and wiser. But when you’re a 23 year old man? This is one of my biggest areas of concern for Nat, a grown up with intense autism. For him basically to survive, and enjoy life, he needs a lot of supervision, adjusting, and fine-tuning.
If the higher-functioning autistics and Aspies are right, I am to presume competence. I am to treat Nat as if he knows in many ways what is going on, what is being said. I am to act as if he understands me for the most par...
Source: Susan's Blog - August 4, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
The pocket
Depression is a black and blue mystery to some. To me it is a deep white pocket of emptiness. I slide in, I can’t get out. And then, suddenly I’m out. I don’t know why or when, but it does happen. It’s not because another person has helped me. It’s not because I’ve stopped and counted my blessings. Counting my blessings only makes it worse, because then I know for sure that I am an idiot for being depressed.
Lately, though, I have been learning that I might be able to control the sliding. That there is something that can keep me from slipping downwards. There is something that actually r...
Source: Susan's Blog - August 1, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Mother love, in itself
My relationship with my sons continues to change. While these changes and these three young men delight me, I have to say that the way my life keeps shifting is sometimes hard to bear.
Most of the time when I am with Nat I am aware of how in-himself he is. When I say “in-himself” I am referring to the philosopher Heidegger’s idea of the in-itself and the for-itself of things, animals, and people. We can only be in the state of in-itself when not conscious of our state at all. Which is probably impossible for cognizant beings. The for-itself, on the the other hand, is when we raise a thing or person into t...
Source: Susan's Blog - August 1, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Autism & Authors: August 12 on Cape Cod
On August 12 there will be an exciting autism event on Cape Cod, and I will be part of it! The event “Autism & Authors” is a fundraiser for Cape Cod Village, an organization founded by Lauren and Bob Jones, a pair of autism powerhouse parents. Cape Cod Village is their vision for a vital community for adults with autism, one that will support, house, and connect its residents to each other and the community at large. Read here about the organization and the event, and how you can attend and/or help out! Creations like Cape Cod Village are keystones for autism families’ quality of life, because we the ...
Source: Susan's Blog - August 1, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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 P...
Source: Susan's Blog - May 30, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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 i...
Source: Susan's Blog - May 21, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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 apar...
Source: Susan's Blog - May 20, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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...
Source: Susan's Blog - May 19, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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 l...
Source: Susan's Blog - May 19, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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 ...
Source: Susan's Blog - May 17, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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. (Source: Susan's Blog)
Source: Susan's Blog - May 14, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
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 c...
Source: Susan's Blog - May 13, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
