October 1, 2006 – September 30, 2007 As information and awareness about AS has increased, AANE has felt and responded to with a year of tremendous growth. This past year has been a year of strengthening our administrative structure to accommodate new and innovative programs, new staff and new technology. Among the highlights of the year was our two-day conference in September of 2007 which attracted close to 1,000 participants, Nick Dubin's highly rated lecture on Bullying and Teasing and our two new Google groups that connect families throughout a wide geographic area. The number of people we serve has skyrocketed; more than 2,000 people have been added to our data base since last year at this time. The number of packets we send out has increased by 50%.
Fundraising and grant writing effort have been augmented to ensure that we have the funds to serve this ever expanding population of families and professionals who seek our support and services. Our Gala was especially successful this past year with a significant percentage of our budget's revenue raised that night. We hope to expand our giving base to Increase the number of individuals who care about our organization and Asperger Syndrome and are willing to donate to the organization. We have increased our budget by 32% over our previous year due to the generosity of individual donors and some foundations.
Below is a summary of AANE's programmatic growth and organizational accomplishments and structure. We hope to continue to be able to grow and develop to meet the needs of all individuals and families within New England
Hank Miller, Board President
Dania Jekel, Executive Director
AANE Board Members - October 2006 – October 2007
Listed by Term Expiration Date
Terms expire October 2007
Hank Miller- President
Phil Schwartz- Vice President
Jan Saglio- Treasurer
Elizabeth McLaughlin- Secretary
Bonita Betters -Reed
Stephen Shore- President Emeritus
Dave Harmon- President Emeritus
Jane Mildred (October 2007)
New Board Members 2007
The Board of Directors met 12 times during 2006/7. One emergency meeting was held following the incident at Lincoln-Sudbury. All minutes of the board meetings are available for review at the AANE office, 182 Main Street, Watertown, MA.
Chapter Directors 2007
RI Barbara Whalen
NH Shelley Viles
VT North Monica Devino (resigned 2006) Kathy Andrews (started spring 2007)
VT South Phelippa Marriner
ME Rachel Farley (resigned 2006) Marc Landry (started 2007)
Western MA Jane Mildred
Dania Jekel, MSW, Executive Director (full-time)
Stephanie Loo, M.Ed., Staff Associate (full-time AS OF 7/06)
Jamie Freed, MSW, Director of Adult Services (20 hrs.)
Jean Stern, M.Ed., Director of Children’s Services (25 hrs.)
Mary Ann Medlar, Database Administrator (20 hrs.)
Yolanda Kolinski, Spanish outreach (20 hrs.)
Staff hired between October 1, 2006 and Sept. 30, 2007
Laura Beretsky, Grant Writer(20 hrs) (Hired September 2007)
Max Sederer, M.Ed. Adult Services(full-time) (Hired September 2007)
Gail Kastorf, M.Ed Employment Services (20 hrs) (Hired August 2006)
Brenda Dater, Children’s Services (20 hrs) (Hired September 2007)
Kristen Z. White, Director of Development (20 hrs)
Carynn Meyers, Afternoon reception
Special Project staff between October 1, 2006 and Sept. 30, 2007
Robin Lurie-Meyerkopf- Trainer Northern NH
Linda Pereira-Administrative Assistant for Portraits 2006
Meghan O’Malley-Annual Conference 2007 assistant
Matt Conrad- Web Development
Kathy Brock- Dandurand Conference
Kip Deese-Laurent- Adult Group Facilitator, NH
Consultants/Seminar/ Group Leaders
Elsa Abele- Seminar
Lynne Mitchell- Trainer
Grace Myhill- Spouse support group
Patricia Huff - Western MA adult activity group coordinator
Continue Boston initiative
Thanks to our many volunteers doing on-going work at AANE in 2005/2006
Lynn Flaherty Cash grants
Jamie Maxfield -Annual appeal
Bekan Knox -Packets
Ann Woodbury- DataBase
Charles M. Donald-Packets
Adult Services Report by Jamie Freed, M.S.W., Director of Adult Services
– Oct. 2006 through Sept. 2007
In the past year, AANE’s Adult Services Department has expanded. Previously, the “department” was staffed by one person, 20 hours per week, responsible for support groups (3), social activities (4x/month), phone calls and e-mails (40-60 contacts/week), individual meetings with adults, family and professionals (3-5 per week) and occasional crisis intervention and coordination of care with other professionals. The Executive Director co-facilitated a support group, fielded overflow phone calls/e-mails and ran the monthly Parents of Adults Support group.
This past year the Adult Services Department has grown in several directions. With the addition of Gail Kastorf, Director of Transitional Supports (title?) to the staff for 24 hours/week, we have been able to focus on the need of adults with AS in the area of employment. Gail has provided trainings to vocational counselors working with the AS adult population, has convened an Employment Advisory Committee, and started a Parents of Young Adults support group on the North Shore of Boston. Gail facilitates a weekly support group, responds to phone calls, e-mails, conducts intake meetings with adults, family members and professionals regarding AS and employment, and runs occasional North Shore social activities. (See Gail Kastorf’s report for details regarding trainings offered).
Kathryn Jantz joined the adult services department 16 hours/week as a social work intern from Boston University, allowing us to expand in the areas of training and supervision, service delivery and research. Kathryn’s roles included 1:1 counseling /coaching; starting and facilitating a Monthly Women’s Group; assisting with the legislative advocacy committee, Adult Conference planning and conducting a research study on the efficacy of groups for adults with Asperger Syndrome.
In the summer of 2007 AANE was able to employ Stephen Nadel, graduate student in Social Work and EdD Candidate from Boston University, to plan and run weekly pizza and game groups for AS adults in response to the requests of adults to provide more regular social opportunities in addition to the designated activity or two of the month which did not necessarily appeal to everyone. Additionally, Stephen was able to convene the highly popular Anime/Manga Special Interest Group, to watch and discuss their special interest, once, while having a Japanese Potluck dinner.
In September 2007, Max Sederer, MA Education, joined the AANE Adult Services Department staff, full-time. He will initially be the organizer, coordinator and facilitator of all social activities for adults. These will include the continuation of previous social activities including the Young Adult Pizza and Game Nights, weekly Adult Pizza and Game Nights, 1-2x monthly social activities (other than game nights), special events in conjunction with Outdoor Explorations (e.g. Rock-climbing), Special Interest Groups (e.g. Anime), Movie and Discussion Series and Book Group. He will eventually begin to focus on the needs of the adults who are transitioning to adulthood by offering a young adult support group. Other types of activities to facilitate improvement of independent living skills and social/communication skills are in the works.
Lindsay Young has joined us 16 hours/week as a BU social work intern and will assist with: group facilitation, both social and support; 1:1 counseling/coaching with adults who otherwise could not afford it, Employment Committee minutes and administrative and planning tasks related to the 2008 Adult Conference.
Grace Myhill, MSW, continues to facilitate several groups for female spouses/partners of men with Asperger Syndrome.
Finally, AANE hosted its first conference for adults with Aspergers and Related Challenges in July 2007. The conference, Know Yourself: The Key to a Better Life emphasized the importance of 1) Understanding Asperger syndrome in general, 2) Understanding AS specifically as it relates to “you” and 3) Understanding “Strategic Disclosure”. Our conference keynote speakers were Stephen Shore who spoke about Self Advocacy for Adults with AS and Zosia Zaks who discussed, Managing your Physical and Mental Health. Workshops were offered by Zosia Zaks on Dating and Relationships, by Sarah Ward on Executive Functioning and by Jamie Freed and Gail Kastorf on Knowing your Brand of Asperger’ s. The conference was attended by 140 people from all New England states plus New York, Florida, Maryland and Oklahoma. The consensus from the evaluations were that we offer this at least annually. In addition to the workshops, the conference featured special interest tables where participants sat with others with similar interests and an ice cream social after the conference was over to provide opportunities for further connection.
Ongoing Adult Programs
Adult Social Group Meets 1-2 times per month for a variety of activities
Visit www.aane.org and go to Adult Programs and Services: Greater Boston Social Group for current Schedule
No cost for group membership – pay by event, many are free
------------------------------------------------------------------------------------------------------------Young Adult Pizza and Game Night
Open to adults 19-26
Meets every two months at AANE office for pizza and board games. Frequently attendees will end up talking with one another rather than playing games.
Support and Discussion Groups Four weekly adult groups which address a range of issues relating to living with Asperger Syndrome including work, relationships, how to succeed in college, what is AS, finding meaning in ones life, strategies to manage the impact of AS in your life and a myriad of other topics.
Groups are 1.5 hours
Intake interview is scheduled prior to participating in the group
Legislative Advocacy Group Group of parents of adults, professionals and adults with AS working to submit or amend legislation that will provide services and supports for adults with AS that are currently unavailable.
Especially focused on employment and the need for appropriate accommodations
Presentation made at the state house featuring adults from the AANE Community
Volunteer “Program” Many adults on whom we rely in our office for significant assistance
Packet Coordination - Bekan Knox, supervisor
Bekan supervises numerous volunteers who assist in assembling and sending 100’s of packets per month.
Supportive, accepting, flexible environment
Can acquire needed work skills and experience
Children Services Report by Jean Stern, M.Ed., Director of Children’s Services
– Oct. 2006 through Sept. 2007
Taking phone calls and emails from parents and educators.
Teaching 2 courses both in Watertown and on the road.
Running an educator conference.
Running the EAG to keep AANE in touch with the concerns of educators.
Running the Children’s Services Group to keep our growing staff connected for quality maintenance of programming.
Write articles for newsletter.
Attended Suffolk U. School of Advanced SpEd Law Studies course.
Meet individually with parents if needed.
Met with the Lexington Youth Forum to establish coordination of supports for AS children in the area.
Organized and ran the second Zoo New England Day for families, July 15
Visited 766 Approved schools, and placed info into our data base.
New Program and Service Initiatives
The biggest new initiative is our greater connections to schools and great school training.
There will be an expansion of the Zoo New England participants (from 60-100)
Expanding services into northern New England with the collaboration with RLM.
Starting and monitoring the On Line Support Group for Parent Children
Listing of speaking engagements; to whom, place and dates not including courses taught every other month at AANE MESPA, A View from Within, Hyannis, May 3 (50
Oakdale El. School, Dedham (50)
Geiger Clinic, Brookline, How To Advocate, Dec. 6,
Marshfield PAC, Oct. 4, How to Advocate,
Auburn Support Group, April 25, How to Advocate
Newburyport Support Group, How to Advocate,
Andover Support Group, How to Advocate,
Pocasset, Children Making Strides, How to Advocate, May 8,
Longmeadow, How to Advocate, May 17,
Derry, New Hampshire, parent organized group.
Conference and Seminars: Differentiated Instruction and the Student with Asperger Syndrome, Nov. 06
An Evening with a MAC Attorney with Julia Landeau , May 30
Development Report by Kristen Z. White., Director of Development
– Oct. 2006 through Sept. 2007
Recruited Co-Chairs; Wrote Committee Member Charge; Began recruiting Committee through visits and calls.
Review donor list for coding “Development Prospects”; Call, email and meet with as many as possible.
Coordinated all aspects of written appeal mailed in November; Highlight AANE’s many services; Include notes from board members – code in database for future.
Worked with Committee throughout the year on details and securing individual and corporate sponsorships.
Networking Receptions/House Parties
Planned four events for October and November 2007 for members and fy06 and fy07 donors. Receptions to be held in Newton, Lexington, Cohasset, and Swampscott.
Volunteer Appreciation Reception
Helped plan June event at MIT Museum.
Annual Conference Public Relations
Compile complete list of all media contacts; Email announcements/press releases; Email requests for articles; make follow-up calls.
Help monitor/write acknowledgement letters; Help with grant research.
Teen Services Report by Stephanie Loo, M.Ed., Director of Teen Services
– Oct. 2006 through Sept. 2007
We do not have the year of birth for every family in our database, but for those we do, we currently show 1,388 parents of children, and 1,458 parents of teens. This means that the demand for services in this age group is intense—and overall Stephanie is the only staff person responding to their needs. Stephanie still edits the newsletter. She is thankful that Laura Beretsky has recently taken over the writing of grant proposals.
Another factor is the number of teens who are especially fragile or challenging to raise: late-diagnosed or otherwise under-served teens, teens who have suffered bullying, teasing, and exclusion, teens who are highly anxious or whose sensory issues or new social sensitivity make it impossible for them to tolerate the demands and environment of large, impersonal public high schools.
For these families we offer:
1. On-line support group.
2. Three face to face support groups.
3. Teen information packets.
4. Telephone and e-mail support, information, and referrals.
5. Special programs.
On-line support group: This year technology glitches forced us to formalize this group as a Google Group, moderated by Stephanie; originally Stephanie was sending out blind copy group e-mails to remind people of upcoming face to face support group meetings and to share new resources. We have about 300 members. Many parents state how helpful they find the group. Many members who attended the fall conference were eager to meet in person other parents they had “met” on-line, and a few succeeded.
Face to face support groups. Stephanie facilitates the parents of teens support group that meets during the fourth week of each month in Watertown. Sue Brooks continues to facilitate the unique group she has led for almost a decade in Reading; uniquely, parents may bring their teens to these meetings to hang out and play games while the adults chat. This year Gail Kastorf started up a new group in Newbury for parents of older teens and young adults. We asked Gail to do so after Stephanie spoke to parents of teens in our long-running Newburyport support group in October 2006; children in that group had aged up and parents of teens found their needs were no longer being met.
Teen information packets: We continue to send out packets where the AANE booklet An Introduction to Asperger Syndrome: Information for Parents of Children and Adolescents is supplemented with teen-specific materials: a section on college; a section on alternative school placement, driver’s ed, etc.; Stephanie’s newsletter article “Tips for Parents of Teens,” and the Wallet Disclosure Card. We may also include information on our annual college panel, transition planning workshops, and teen social events (new in fall 2007).
Telephone calls to the AANE information line, plus e-mail requests: Stephanie spends a lot of her time helping parents individually by phone and/or e-mail. First time callers usually get a follow up e-mail with membership materials, information on support group meetings and other teen services, “Tips for Parents of Teens” and the Wallet Disclosure Card. Others may get sibling materials, the Attwood essay on girls, or information on schools or post high school options. A fair number of teachers and other professionals also call—sometimes on behalf of especially fragile/at-risk families. Some parents call only once or occasionally for specific referrals or with specific questions. Others call for on-going support to help them weather especially challenging situations. Families may call whose kids have been hospitalized one or more times. Many parents are seeking alternative school placements.
1. 2006 College Panel: Dania organized a panel of several college students with AS and college coach Marie Hicks. This gave teens and their parents a look down the road as they began this part of their journey. The fall 2007 panel just took place recently, and was also quite well-received.
2. In fall of 2006, Terri McLaughlin of the Federation for Children with Special Needs gave a two-evening workshop on transition planning: making the most of the high school years to prepare students with AS for adulthood and maximum independence after high school graduation. Transition plans should be written when students are 14, become part of the IEP, and be implemented from age 15 through graduation.
3. Dads’ Night/Moms’ Night: One month, for the regularly scheduled Watertown parents of teens support group, fathers met together with Scott McLeod while mothers met with Stephanie. The hope was to encourage parents to increase their involvement in their teens’ lives, and give them a safe place to raise their own questions and concerns without fear of censorship by a possibly more vocal spouse.
4. Teen Girls’ and Moms’ Afternoon Out: In response to meeting two mothers of depressed, artistic teen girls—and hearing from additional mothers by phone and e-mail—Dania and Stephanie created this special afternoon last spring. Caitlin Medlar, a college freshman, and service dog trainer Katrin Andberg spoke, followed by questions, snacks, and networking.
New initiatives for fall 2007: Without being pulled too far into direct services to teens, Stephanie has sought opportunities for parents of teens to connect with other parents, and teens with other teens.
1. Stephanie and Dania worked with Kathryn Jantz (AANE’s 2006-07 BU Graduate School of Social Work intern) to set up one social activity per month for high school students accompanied by a parent.
2. Through the Google Group, some parent and teen house parties took place. Stephanie is experimenting with facilitating that process: finding volunteer host families, and helping with invitations and responses.
3. Transition planning workshops. In addition to repeating Terri McLaughlin’s two part series this year, Stephanie has asked Ellen Korin to do a Sunday afternoon session to help the teens themselves write the key “vision statement” for the transition plan.
4. Once AANE moves, we may consider following Sue Brooks’ model of allowing parents to bring teens to support group meetings, and providing some simple activities for them in an adjoining room. We need to find out what parents would feel about this option, and possibly whether they would be willing to pay toward staffing the teen room. We may also seek a grant to support it—in which case we might look into starting a group in southeastern Massachusetts.
Vocational Services Report by Gail Kastorf., Director of Vocational Services
– Oct. 2006 through Sept. 2007
An Employment Committee was formed to develop goals for expanding employment-related services. It consists of Gail Kastorf, Fred Conrad, David Velton, Tony Monterio, Susan Shamus and Bill Maxfield.
The Committee developed two questionnaires to get feedback on the scope of the problem of finding and maintaining employment, and to identify employers within our community who would be willing to learn more about Asperger’s Syndrome. The questionnaires are available on the AANE website under “adult services”.
A new brochure highlighting the positive attributes of workers with AS and offering AANE as a resource for employers to gain information and support.
We revised the “disclosure letter”
We developed a checklist on how to choose vocational provider agencies.
The Committee also identified the following goals:
♦ To offer training to MA Rehabilitation Commission counselors and staff at provider agencies about the specific characteristics of AS that effect employment, and strategies and accommodations to overcome them;
♦ To develop and offer a pilot course for young adults with AS to enhance their self-knowledge and assist in identifying the right job match;
♦ To collaborate with the One Stop Career Centers to make them more “user-friendly” for people with AS;
♦ To develop a networking group for those actively searching for work.
Training has been developed and offered to the Lawrence, Springfield and Fall River MRC offices and the staff of Resource Partnerships, a federally-funded program. The Lowell Area MRC office has been scheduled.
I participated in the planning of the NERCEP/RCEP (for Voc Rehab. Counselors) conference at Holy Cross on Autism Spectrum Disorder and presented at one of the afternoon workshops.
AANE offered our first conference just for adults on July 7, Know Yourself: The Key to a Better Life, that included a workshop on AS and work.
We have also added an additional support group for adults, most struggling with employment issues, and a group for parents of late teens/young adults to discuss transition and independent living issues.
Talks given in Oct. 2006 through Sept. 2007
1/11/07 AS and work, Parents of teens, Spotlight Program, Danvers
3/29/07 Practical Strategies for Employment, Educators, Northshore Educational Consortium, Salem
4/12/07 Job and Services Fair, Fair Haven
4/17/07 AS and work, MRC counselors, Springfield Office
4/25/07 Practical Strategies for Employment, MRC counselors, Lawrence Office
7/23/07 Practical Strategies for Employment, Placement staff, Resource Partnerships, Natick
2/6/07 What’s My Match, Barbara Bissonnette, MIT
6/13/07 Autism Spectrum Disorders: Pathways to Employment, Holy Cross, Worcester
7/7/07 Know Yourself: The Key to a Better Life, Bentley College, Waltham
Hispanic Services Report by Yolanda Kolinski, Director of Hispanic Outreach Services
Oct. 2006 through Sept. 2007
The effort to reach out to the Latino community is off to a great start. My phones are busy with calls from parents of children newly diagnosed, and from people who have attended my Entendiendo el Síndrome de Asperger workshop. There are also calls from professionals looking for referrals and information for children, teens, and adults with Asperger’s. Our database now includes 40 Spanish-speaking families, and 35 bilingual professionals. In January I appeared in a half hour television health show, Consejos de Salud which is sponsored by Latin Health Institute. On March 10th, I was invited to do my workshop at the federation for children with Special Needs annual Conference. I have also set up tables in various health fairs in the Boston area. I want to extend our welcome to our new friend from Asociación Asperger Argentina, the President, Mr. Ruben Barmat.
Update on Google Group for Parents of Children with AS:
We have over 160 members on-line. Parent response has been very positive; with parents sending on personal emails explaining how the group is helping them.
There have been quite a few postings regarding transition to school and school programs during the months of September and October. A typical week includes: requests for information, sharing of experience, venting difficult emotions, and receiving support and encouragement from other parents. Topical areas can cover: treatment modality questions, emotional support, sibling/family issues, evaluation and educational decision making, making time to re-charge batteries, and celebrating the uniqueness and strengths of our children.
Information also continues to be placed in files on the website so that parents can find salient information more quickly.
Talks given in Oct. 2006 through Sept. 2007
10/30/2007 Adult with AS NASW HomeEd program
1/18/2007 Adults with AS Mass General Hospital, Boston
1/22/2007 Transition, Hampton, CT
2/27/2007 General Information MA State House
3.22/2007 College Students with AS Essex Community College
3/26/2007 General Information, League School Board of Directors
5/30/2007 Adults with AS U.Mass Boston
6/8/2007 Adults with AS Riverside Family Partnership