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 fundin...
Source: Susan's Blog - May 3, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
What I’m learning
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, “Y...
Source: Susan's Blog - April 21, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
If you are a Massachusetts resident…
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 w...
Source: Susan's Blog - April 12, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Not Your Average MIL
Here is a piece I wrote for WBUR/NPR’s Cognoscenti column, about my mother-in-law Eleanor – whom I now cherish. (Source: Susan's Blog)
Source: Susan's Blog - April 10, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
A Boston-Area Event About Work & Disability
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 ...
Source: Susan's Blog - April 7, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Red Tape Rant
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 signi...
Source: Susan's Blog - April 1, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
The Dreaded Cycles
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 ...
Source: Susan's Blog - March 31, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Autism Mommy Swami: Braces
Dear Swami,
What advice do you have regarding getting braces put on?
My son is almost 13, has minimal language and will not understand why his teeth will have these “things” on them. He doesn’t have sufficient receptive language for him to understand. In addition, how can we teach him to keep his mouth open long enough for braces to be applied to his teeth? And finally, the braces will
hurt when first put in. We won’t know where exactly it hurts in order to put on the wax the orthodontists give the children to coat their mouth when there is a problem. My son will not be able to exactly pinpoint...
Source: Susan's Blog - March 22, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized nocomments swami Source Type: blogs
Dealing with what comes up on a walk with Nat
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 ...
Source: Susan's Blog - March 16, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Old Deval Had to Fund…E-O-H-H-S
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!
O...
Source: Susan's Blog - March 13, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Tim Shriver: Next Pope Should Be a Mystic
Once again, my friend and mentor Tim Shriver (Chair of Special Olympics) hits one out of the park, with this brilliant Washington Post oped! (Source: Susan's Blog)
Source: Susan's Blog - March 1, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Why Job Training Matters for Students w Autism
You can read my latest piece on autism and job training in Education Week, right here. (Source: Susan's Blog)
Source: Susan's Blog - February 20, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
A Mother’s Dream
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 al...
Source: Susan's Blog - February 14, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Tim Shriver: “We the People”
Chairman of Special Olympics Tim Shriver’s eloquent and forceful take on what “We the People” can mean for our country and perhaps the world. Read it here. (Source: Susan's Blog)
Source: Susan's Blog - January 27, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Getting Balanced
Fast comfort.
The top of the roller coaster.
A little danger stops my breath. Lifts my blood. My head floats near my neck. Legs orbit endlessly around their pedal planets. Highest gear feels like lowest. The world turns upside down. The best of childhood, like jumping off a swing at the scary point.
The hill.
It varies me daily though always the same. Yesterday: burning lungs, smooth muscles. Today: short gulps of breath, burning pull of thigh.
Why? Still, if I stare only at the ground, submitting to my tire’s steady insistent seduction, if I remain mesmerized by my struggle, I don’t see what’s left ahe...
Source: Susan's Blog - January 20, 2013 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
