Susan's Blog

Sunday, April 21, 2013

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, “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.


Friday, April 12, 2013

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 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.

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

Wednesday, April 10, 2013

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.

Sunday, April 7, 2013

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 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:

Michael W. Weiner
Financial Advisor
Special Needs

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

617-312-5115 (Cell)
E Mail: