The Spectrum - Northeast Arc

VOLUME 26 

ISSUE 3 

SEPTEMBER 2017

The Autism Support Center

The Spectrum Contact us: SUSAN GILROY, EDITOR CO-DIRECTOR 978-624-2302 GLORIA RICARDI CASTILLO CO-DIRECTOR 978-624-2301 WHITNEY RYAN POSADA SENIOR COORDINATOR/ BROKER 978-624-2305 STACEY CRUWYS COORDINATOR/BROKER 978-624-2347 JACKIE MURPHY COORDINATOR/BROKER 978-624-3721 PHYLLIS KIZNER ADULT SPECIALIST 978-624-3747

Family Festival September 9th See page 5 For details

Contributed by Jennifer Nisbet

My son Jeremy “aged out” in April and my daughter Leanne graduated high school in June. Her shopping is done and soon she will be headed off to college. When both were younger I never really thought about their four year age difference, but late middle school for Jeremy was when it hit me that both would be launched into the world at the same time. It kept me up at night for a while because not only was it a big change for them, it was a big change for us, their parents, and we needed to plan! The common thread of planning for both was making sure they kept up with school work, always did the best they could, asking for help if something wasn’t clicking, and most importantly that we had their backs, wanted the best for them, and would never steer them wrong. The differences in planning was significant. For Leanne, there was already built in supports in the schools to help guide students no matter what track a “typically developing” child will go down. Will it be a trade, military, direct to work, gap year, two year or four year college? For Jeremy there was useful information from the school, but the rest of it needed to be

pieced together as he mastered certain skills. As the saying goes, “if you’ve met one person with autism, you’ve met one person with autism,” which in turn meant that I needed to find out what was available for someone who fit his profile. Being born in 1995, Jeremy is considered part of the “coming tsunami” of autistic children growing into adulthood. According to an article by CBS Boston’s David Wade, “in the next decade, a half million young adults with autism will need a place to live, and a job.” Between hearing about “when the bus stops coming” or “falling off the cliff,” I just wanted to stick my fingers in my ears and say “la-la-la, I can’t hear you,” like a little kid. What also made it overwhelming was that laws were changing, programs were adjusting, and it seemed that everyone was starting a program for kids on the spectrum. Things were in flux when I wanted a neat, tidy plan and I had to go with the flow. I started by projecting out 2-3 years for Jeremy and not anymore because of all the changes going on. Plus, planning further out only adds to the ‘what if’ list which can stop you in your tracks. (Continued on page 2)

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IT S A ACT

Autism is the fastest growing serious developmental disability in the nited States.

One family’s journey (Continued from page 1) Transition planning started at 14 years old and self-direction was becoming a viable delivery option, so I attended more workshops, different support groups, made sure I was on the correct listservs, and most important, I networked and talked to anyone who listened! Fast forward to May of 2017 and you will find Jeremy working part time at two different jobs, participating in Northeast Arc recreation programs, hanging with friends and working on life skills at a local social group, and being mentored on skills in the home and community. At this point too, Leanne had picked the college she wanted to attend. After all the running around it was nice to have everything falling into place for the both of them and getting settled into a new routine. Soon enough though the routine would change again with Leanne heading off to school. Jeremy and Leanne always had the typical love/hate sibling relationship growing up. She tolerated a lot of his behaviors over the years, but would also be the first one to call him out on something that she didn’t agree with. With all the college visits, filling out of forms, and shopping, Jeremy never commented too much about Leanne going to college, so we weren’t really sure how he felt about it. About a week ago, Leanne was out to dinner with her friend so it was just me, my husband Jim, and Jeremy at the table. As we started to eat, Jim innocently said, “this is what it is going to be like when Leanne is off at school.” At that point Jeremy stopped eating and just looked at us. We asked him what the matter was and he said that he had a “funny feeling” in his stomach. We knew at that point that he was going to really miss her, and when we asked him, he said yes. We explained that she would be home for holidays, we would visit her, and that we could facetime her, too, which seemed to relieve him a little. We then suggested that once she was dropped off and settled in, he could plan an overnight trip for me, Jim and himself. When Jim and I plan family trips, we get buy in from everyone on where to go, but usually Jeremy stays out of the details. We are beyond having to write social stories, but we do talk about the schedule of what we plan on doing with the explanation that things may change. We thought that with him planning a whole trip, right down to sites we would visit, where we would eat and when we would take a break, he would be excited about having full control. He wanted nothing to do with it because he said that it wouldn’t be a vacation without Leanne there. He ended up getting up from the table and throwing his partially eaten dinner away, which is unheard of for him, and headed up to his room. We let him stay there and process everything before Leanne came back from being out with her friend. When she returned we filled her in with what went on and suggested that she make a plan to go out with him before she heads off to school. I think she was touched with the way he reacted, because Jeremy really is the “man of few words” when it comes to his feelings. She went upstairs to talk with him and whatever she said made everything right in his world again. He even joked with us about taking her room over when she was gone, but Leanne

called him out on that plan, big time! Jeremy, in his usual way of communicating in spurts, recently mentioned to me that one of his friends at his social group is the only one at home now, too. I was happy to hear that he was mentioning it to his peers and that he was getting their feedback on it. It made me hopeful that the “man of few words” might branch out a little and get his feelings validated. So here we are on the verge of another change. At this point, Jim and I have been able to figure most things out for Jeremy with the help of the ‘village’ we created that includes agencies, family, friends, our community and some really great neighbors for natural supports. Leanne has also benefited from these connections as well, and has become a very tolerant young adult. We have gotten this far and I am confident that we will be able to continue to help guide both of our kids in the next chapter of their lives.

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IT S A ACT

Autism is the fastest growing serious developmental disability in the nited States.

Contributed by Jill McEntee MS, BCBA, LABA Autism ABA Services

For many children, the return of the school year can be a source of anxiety and uncertainty. Starting a new grade, switching schools, meeting new teachers and friends, these are all major transitions. When you consider that school age kids have more than likely spent the summer sleeping in, going fun places, and spending time with family and friends it’s no wonder why there may be apprehension to go back to early mornings, full days and homework most nights. But soon it will be time to return to Fall, so now that September is approaching, here are some tips to make the back-to-school transition a little easier.

setting the stage for what is to come (or what a child’s expected behavior is for a particular situation) is called priming. One way to do this is to create a visual calendar to mark down the days before the start of the school year, and go over it with your child on a daily basis. Another way might be to just talk (often) about what your child can expect for their first day or week or school, and what he/she can do if they are feeling anxious about the upcoming transition. You can also buy school-related toys so you can “play school” at home to make prepping for school more fun.

Remember If you are seeing an increase in chalTake a tour If your child is attending a new lenging behaviors at home before the school year school this fall, try to plan a trip or two to visit in the starts, don’t hesitate to seek out assistance. You can coming weeks before school begins. Taking a tour of reach out to the professionals that work with your the facilities can help ease the transition of an allchild at home and at school to discuss further stratenew environment. Even if your child is starting gies to make this year’s back to school transition school somewhere new, if they are familiar with the successful. Each fall the start of school is different setting they will be less likely to have as difficult a from the last and brings its own sets of challenges, time adjusting when the school year officially begins. so don’t be discouraged if this transition feels like it is becoming increasingly more difficult than last Prep your gear Having your child be a part of the preparation of the new school year will give them years. Switching up strategies and discussing your a sense of control and will also make part of the up- concerns with the individuals who work with your coming transition predictable for them. For instance, child will ensure that the start of the school year you could have your child pick out their clothes that passes as smoothly as possible. they would like to wear on the first day back, let them help pack their backpack with the supplies they will need or if you plan to do some back to school shopping have them be a part of picking out their new stuff. By doing this you will create predictability and motivation to participate in school-related activities. Apply a primer It is also helpful to provide daily reminders and activities pertaining to school in the days leading up to the transition. In behavioral terms,

To contact Notheast Arc’s Autism ABA Services, call 978-624-2352 or email [email protected]

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IT S A ACT

Autism is the fastest growing serious developmental disability in the nited States.

GUIDE TO Massachusetts Rehabilitation Commission’s (Northeast Region) Pre-ETS Services Northeast Arc’s P.R.E.P. (Preparation Readiness Employment Program) Overview This community based program is managed by the Northeast Arc and is funded by the Massachusetts Rehabilitation Commission (MRC). The goal of P.R.E.P. is to provide students the skills, training and experiences necessary for competitive employment. One day a week, students will participate in employment readiness trainings, group activities, travel training, resume development, work tours, and other career planning activities. Students will conclude P.R.E.P. with a paid internship opportunity in the community with individualized job supports.

Individualized · Community Vocation Assessment · Employment Rights and Skills · 1:1 meetings with Co-Manager · Development of Career Portfolio Work-Based Learning Experience/ Internship: · Students will participate in a community based paid internship · Each student will receive individualized job supports at their community based internship Referral Process: · Each student must be referred to MRC via: MRC Direct Referral (by school or by parent), 688 Referral · MRC counselor will work closely with the student’s parents/ guardian and the school to determine if student is appropriate for services · MRC counselor will refer student to Northeast Arc’s P.R.E.P. and will have an initial intake meeting to discuss appropriate services.

A Student with a disability that we work with · Is in an educational program · Is eligible for receiving special education or related services · Is on an Individual Educational Plan (IEP) or 504 Plan · Eligible for services with Massachusetts Rehabilitation Commission · Enrolled in an educational plan and under the age of 22 · Planning on pursuing employment or post-secondary education opportunities after completion of High School · Able to independently manage personal care, ambulation, and have the ability to self-manage behavioral needs · Able to self-administer medication if it is required throughout the program time

For more information, contact program director, Brian Lane, at 978-624-3071.

Job Exploration Counseling: Group · Employer site visits · Job shadowing · Resume development/ preparation · Administration of aptitude test and interest inventory Individualized · Career Pathway exploration · Career Plan · Explore Local labor market in both interest area and aptitude · Job Development Workplace Readiness Training: Group · Team Building · Social Skills in the workplace · Community and Work tours/exploration · Money Management · Independent Activities of Daily Living · Safety Skills · Benefits training 8

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IT’S A ACT

Autism is the fastest growing serious developmental disability in the nited States.

Focus On Adults

PREMIUM ASSISTANCE Do you have a family member that has a primary private insurance plan and uses Masshealth as secondary insurance? Is your child currently on your family group plan, but also gets MassHealth? Then, you may be eligible for Premium Assistance via MassHealth.

MassHealth helps eligible members pay for their health insurance by sending them monthly payments Eligibility for MassHealth Premium Assistance is determined by the individual’s MassHealth coverage type and the type of health insurance that the individual has or has access to MassHealth Premium Assistance programs are designed to provide MassHealth a cost effective way of delivering benefits to MassHealth members who have health insurance

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Want to know if you qualify for a monthy check from Masshealth? Call the number below for more details. Premium Assistance Hotline: 1-800-862-4840

If you have questions about Turning 22 and adult autism services, contact Phyllis Kizner, Adult Specialist, at 978-624-3747.

Congratulations to Joyce Kohn Joyce Kohn of Beverly has been chosen as this year’s LEND self-advocate. Joyce graduated from Lynn Classical high school and received an associate’s degree from Newbury Junior College. She served on the adult sub-committee of the Governor’s Autism Commission and has volunteered at North Shore Community Baptist church for various events. Joyce is an adult living with ASD and the mother of two sons, one who is also on the spectrum. With the encouragement of adult specialist, Phyllis Kizner, Joyce applied to the LEND program to be able to take her life experience of advocating for herself and her children and turn it around to help others with disabilities. Lend Fellows spend approximately 400 hours in the program. They participate in a curriculum and develop a project with a community based organization. They have community visits, leadership seminars, attend a disability conference in Washington DC and participate in interdisciplinary clinical teams. The approximately 20 participants come from a wide variety of fields, such as psychiatry, social work, dentistry, counseling, law, nutrition, and education, to name a few. Each class also has one self -advocate. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the Institute for Community Inclusion at Children's Hospital Boston provides advanced interdisciplinary training to health and counseling professionals and to families to improve their knowledge in working with children, adolescents and young adults with developmental and related disabilities. This training is multi-focused and ranges from policy issues and team collaboration to specific clinical practice and support models. Trainees develop their leadership potential to improve the status of infants, children, and adolescents with (or at risk for) neurodevelopmental disabilities and to enhance systems of care for these children and their families. 11

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IT’S A ACT

Autism is the fastest growing serious developmental disability in the nited States.

Ask the Advocate:

Ask the Advocate! Nancy Lucier Northeast Arc Advocacy Program

Transportation Question

My daughters IEP meeting was in June and I don’t agree with the schools evaluations, is it too late to request independent educational evaluations be done through the school?

Answer

No, the right to request a publicly funded independent education evaluation continues for 16 months from the date of the evaluation with which you disagreed. There is a cost sharing sliding scale fee depending on family size and income information in relation to Federal Poverty Guidelines, although when a student is eligible for free or reduced cost lunch the school district will pay the full public expense (of an equivalent type of assessment done by the school). Remember to always request evaluations in writing, the school district has 5 school days to respond/send a consent to test form. If you need an advocate, please call our Advocacy Intake Coordinator at: 1-978-762-8352

TRANSITION TIPS The Transition Planning orm (TP ) should be updated annually. I recommend requesting a transition meeting separate from the annual IEP meeting. The team should help the student understand their needs, strengths, preferences, interests and refine their post-secondary goals (i.e. vision) through ongoing age appropriate transition assessments. Transition services should be coordinated and results oriented designed to improve the student’s academic and functional achievement (to be independent as possible, generalize skills in all environments, promote least restrictive environment principles) and individualized. The team should develop measurable annual IEP goals and designate transition services to address the students disabilityrelated needs and build skills in an additive fashion, moving the student closer each year toward achieving their postsecondary goals. Contributed by Nancy Lucier Contact Judy Bouffard at 978-624-2321 if you need assistance with transition issues. 14

IT S A ACT

Autism is the fastest growing serious developmental disability in the nited States.

Support Groups GRO P NAME Mandarin Group

Burlington Group

Spanish Group

Newburyport Group

GRO P DESCRIPTION MEETING DETAILS Central Middlesex Area ASC-sponsored Acton Memorial Library, 486 Main For Mandarin-speaking parents St, Acton. Bi-monthly meetings, of children diagnosed with ASD; TBA. Facilitator: Wen Li connect and network with other families; enjoy periodic family days ASC-sponsored @ Burlington Public Library, 22 General discussion and netSears St, Burlington. working for parents of children Meets the 1st Monday of the month and teens with ASD. @ 6:30pm Facilitator: Chris Curtin Occasional guest speakers. Merrimack Valley Area ASC-sponsored for Spanish@ Family and Youth Initiative, 130 speaking parents of children Parker Street, Lawrence; Meets 3rd with disabilities. Occasional Friday of the month, 9:30-11:30 am. workshops & events offered Facilitator: Gloria Ricardi Castillo ASC-sponsored for parents of @ Newburyport 5 Cents Bank, State children diagnosed with ASD. St, Newburyport; Meets the 2nd General discussion and netThursdays at 7 pm. Facilitator: Nanworking. cy Lucier North Shore Area

CONTACT INFO ASC at 978-777-9135 or [email protected]

ASC at 978-777-9135 or [email protected]

Gloria Ricardi Castillo at 978-624-23201 or [email protected]

Contact Susan Gilroy at 978-624-2302 or [email protected]

Parents of Adults (18+) with AS NO SEPTEMBER MEETING

ASC-sponsored for parents of adults with Asperger’s, high cognitive autism; general discussion, info sharing.

@ Autism Support Center, 6 Southside Rd, Danvers; 1st Mondays, 6-8 pm; Facilitator: Phyllis Kizner

Phyllis Kizner at 978-6243747 or [email protected]

Grandparents’ Group

ASC-sponsored for grandparents coping with ASD. Networking, info sharing, support.

@ Autism Support Center, 6 Southside Road, Danvers; 3rd Wednesdays at 10-11:30 am Facilitator: Susan Gilroy

Susan Gilroy at 978-6242302 or [email protected]

Danvers Group

ASC-sponsored for parents of young children (under 10), info sharing and occasional workshops/guest speakers NeArc-sponsored for parents of transition-aged youth ((14-22). Discussion and workshops on turning 22 related topics ASC-sponsored for adults with Asperger profile

@ Autism Support Center, 6 Southside Rd, Danvers, 6 to7:30 pm; 3rd Thursdays; Facilitator: Jackie Murphy @ NeArc, 6 Southside Rd, Danvers; 3rd Tuesdays at 6:30-8:30 pm; Facilitated by Nancy Lucier

Jackie Murphy at 978-6243721 or [email protected]

@ Breaking Grounds Café, 67 Main St., Peabody. 1st Thursday,11am12:30pm. Facilitated by Phyllis Kizner @Panera Bread, Liberty Tree Mall, 100 Independence Way, Danvers; 2nd Tuesdays at 10 am. Facilitated by Aymee Lucifora @ Brothers Deli, 41 Market Street, Lynn; Last Thursday at 10 am. Facilitated by Fariba O’Donald

Phyllis Kizner at 978-6243747 or [email protected]

Transition Group

Adult Group (18+)

Danvers Panera Group

Lynn Group

Lynn Spanish Group

NeArc Family Resource Center sponsored; for parents of children with disabilities; general discussion NeArc Family Resource Center sponsored; for parents of children with disabilities; general discussion NeArc Family Resource Center sponsored; for Spanishspeaking parents of children with DD; general discussion

@ CenterBoard, City Hall Sq.Lynn; 2/28 Facilitated by Aymee Lucifora

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Nancy Lucier at 978-6242350 or [email protected]

Aymee Lucifora at 978-624 -2380

Aymee Lucifora at 978-624 -2380

Aymee Lucifora at 978-624 -2380

The Spectrum The Spectrum is a monthly electronic publication of the Autism Support Center. This newsletter is published to inform parents and professionals of resource information, upcoming events, and other autism-related topics. ASC is funded primarily by the Mass. Dept. of Developmental IN ORMED. EMPOWERED. CONNECTED. Services. The views expressed do not necessarily reflect those of the funding source. ASC does not endorse any product, service or theory referred to in this newsletter. Articles, resources and announcements are included for information only. Anyone wishing to contribute information for this newsletter should send it to [email protected] or to our mailing address Parent contributions are encouraged. Announcements are included as space is available.

PLEASE CONTACT ASC AT 978-777-9135 OR VISIT HTTP //NE-ARC.ORG/SERVICES/AUTISM-SERVICES/ OR MORE IN ORMATION.

6 SOUTHSIDE ROAD, DANVERS MA 01923

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