Autism Parents: Get Thee to Concord Mass 10/24/13
If you can get to Concord Massachusetts tonight 10/24, to Minuteman Arc (see below), and you are seeking info on putting together a home for your adult child with developmental disabilities, go to this fantastic workshop. Doreen Cummings is the presenter and she is someone I’ve known forever, and she knows it all about housing in the adult autism/DD world. This is one of those workshops that will have accessible info for you. If you get overwhelmed, write it down and contact me for help: susan@susansenator.com I’ll do what I can! Here it is. Go and I’ll see you there tonight!
Crafting a Home for Your ...
Source: Susan's Blog - October 24, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Help families finance adult autism housing
Here is a plea for action that came my way via autism advocate Cathy Boyle, who founded a wonderful organization called Autism Housing Pathways. I have edited a little bit for expedience:
****How do autism families figure out the financing for their adult child’s housing?****
While there are a number of programs aimed at providing financing for lower-income and first-time home buyers, families creating housing are largely treated — unfairly — as purchasers of vacation homes.
However, there is one mortgage product aimed at these families: Fannie Mae’s Community HomeChoice, a variant of Fannie MaeR...
Source: Susan's Blog - October 20, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Renaissance Rebirth
People ask me where do I get the energy to do this and that. I truly do not understand this question and it makes me feel like I’m a little bit of a freak. But you know what? I am! That’s the answer. I am not normal. And like the bumper sticker says, it is genetic. I inherited it from my kids.
But — yay. Because my children really set me free. From Nat I learned how weird and utterly unlike everyone else a person can be. (My therapist would not like my word choice, “weird,” but I calls ‘em as I sees ‘em. Weird doesn’t have to mean undesirable or bad. I just like it better tha...
Source: Susan's Blog - October 20, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
The waiting is the hardest part
I keep going to an image of Nat from yesterday when he was home visiting, of him sitting on the couch across from me, watching. Waiting. He was waiting to be told what would happen next. If we told him nothing, then nothing would happen. He would just continue to sit, watching, waiting.
I see this image of Nat, perched, unoccupied, and a softly creeping sadness wraps its way slowly around my heart and throat. I try to move away from it, to detach my body from its long sticky reach but it is there nonetheless. I have been running from this picture for two days now, maybe longer. In the middle of organizing my third autism p...
Source: Susan's Blog - October 14, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Autism Mommy Swami Q & A: Age-Appropriate?
Dear Swami,
My son W will be turning 13 in January. He has limited communication skills and in many ways is like a younger child. He probably falls in the moderate to severe range on the spectrum. I try to encourage his independence. He does chores around the house. It has been recommended to me that I steer him away from some of the things he likes that are for younger kids. For instance, he is perfectly happy to sit and watch Sesame Street. He will go on You tube and pull up Teletubbies and Caillou.
We recently attended a birthday party for a very high functioning 11 year old girl. She is obsessed with animals and bugs...
Source: Susan's Blog - October 9, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized autism mommy swami Source Type: blogs
The Radical Right is Wrong
Because of House Republican behavior in forging ahead with this particular shutdown, our very democracy is now at stake. This is not how our country’s checks and balances work. We have three branches of government in this country and all three have already spoken on Affordable Care Act, aka “Obamacare.”
Steve Almond’s piece in today’s “Cognoscenti” column at WBUR/NPR online is an excellent explanation of what is at the heart of the Republican resistance to the Affordable Care Act. What is at stake here, because of this blackmail on the part of the House Republicans, is indeed the A...
Source: Susan's Blog - October 6, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
My Latest WBUR/NPR “Cognoscenti” Column
I write for our NPR affiliate station, WBUR, and last week 9/25, this piece was published. (Source: Susan's Blog)
Source: Susan's Blog - October 2, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Max & Nat and Separation
This piece of mine was published in the Jewish Advocate today, October 2:
My two sons
I t’s the New Year, and autumn, and all of this usually hits me right in the face, not gracefully at all. Where others rejoice in the way summer ends in bountiful harvest and blazing color, I feel loss.
In the past three years, fall has become that time when my two older sons move back to their own homes, and I have a hard time with that. When the boys leave, they suck everything out of the room – including my peace of mind. Although Nat, my oldest, goes back to his group home in Boston every weekend, when it is coupled with my middle...
Source: Susan's Blog - October 2, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Stuff I notice could be done better in this world now that I’m almost 51
1) If you must jaywalk, do not read your phone and go really slowly at the same time.
2) If someone clearly lets you in ahead of them, wave or smile at them.
3) If you did something wrong while driving and someone honks at you, don’t honk back at them.
4) Do not listen to your music so loudly that I can feel the beat and hear the lyrics — even though you have on earbuds.
5) If I hold the door for you, thank me.
6) Let people out before you go in. Elevator, restaurant, store.
7) If you’re riding a bike, don’t antagonize drivers by riding two abreast or taking the entire lane when there is a bike lane...
Source: Susan's Blog - September 18, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Necessity is why this mother invents
I found myself almost going back in time today as I thought about Nat and reading. I want him to read more. I have wanted that for ages. Reading was in his IEP year after year. He knows how to read, has known since he was about 7 or 8. He has progressed to a first- or second-grade level, and there he has stayed. I don’t care, I don’t mind, who cares what grade he’s at as long as he’s reading. But I don’t think he is. I do hear from the house staff that Nat does choose to read when he has down time. I don’t really see that here, but I have to admit that we don’t often think of offer...
Source: Susan's Blog - September 10, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
John & Ben, two menschen
We went to a party at Nat’s house. It was all the families plus John, the manager. It’s weird calling him “John, the manager,” because he is so much more. I take pride in the fact that Ned and I found him. Well, the wonderful human resources person at the agency found him. With her, we were the ones who first hired him, right when Nat was done with school but had no group home yet. Our agreement with Department of Developmental Services (DDS) was to have Nat at home with as much staff time as we needed, so that our family life would remain stable. The agency we work with, Advocates, advertised with ...
Source: Susan's Blog - September 8, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
A Great Idea: Respite Worker Registry
Finding caregivers and respite workers is perhaps the most difficult task for anyone with a serious disability. Anyone reading this blog probably knows what goes into finding good workers for our guys and how we need to be sure they are trained! And then, we pray to keep them once we’ve found them.
There is a group out there that is working to make this an easier task, as well as a way to provide training for these workers. The nonprofit RewardingWork.org was started by a dear friend of mine years ago, as an organization that would help find caregivers for those on Medicaid or Medicare. Helping family caregivers is t...
Source: Susan's Blog - September 3, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Emergence
A lot happened for me 2005-2006. I started this blog, and began to hear from other people who understood. Some bad stuff happened too, things I can barely talk about or think about — probably the worst things so far in my life, worse than Diagnosis Day. But unlike that, these things appeared to be beautiful at first. But you know how it is, as long as you survived, it’s okay. Or at least, it’s over.
[Deep breath. Okay. Look at the sun, pull yourself back to the Good.] Perhaps the best thing that happened during that time was that I found yet a different form of self-expression. I started bellydancing, a...
Source: Susan's Blog - September 2, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
No Milestone Unturned
When Nat was a baby, one of his favorite toys was one he got when he turned a year old. It was a “kitchen,” but it really was a small oven-toaster-microwave in one solid chunk of bright-colored plastic. The oven door could open and shut, open and shut, the burner could spin (because after all, don’t we want our burners to spin?) and the toast could be pushed down and then it would pop up–with toast. Boing, boing.
Oh, how Nat loved to make toast! Was there ever anything more adorable than his blond-ball head hovering right in front of those little smiley-faced pieces of bread? I just now brought the ...
Source: Susan's Blog - August 31, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
College Essays vs. Being a Person
Here is a Tumblr post from Max, who appears to have found his own compass and knows where to go. I am always learning from that boy.
(Source: Susan's Blog)
Source: Susan's Blog - August 29, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
