FASD Support Series

Prevalence rates for FASD are twice as high as those for autism and the need for information about and services for individuals with FASD is great.  Orchids FASD Services of Wisconsin is offering a monthly virtual series to provide:
  • Information and conversation about the challenges you face 
  • Exploration of local resources to meet these challenges and support needs
This series of meetings is held online from 1:00pm – 2:30/3:00pm (central time) the first Friday of each month.  The first hour is both informational and conversational about a specific challenge presented by FASD.  Attendees are invited (this is optional) to join smaller group discussions in a break-out room to continue conversation and sharing on a more personal level.  The intent is to help with the creation of on-going groups that meet more frequently.
 
Help us share this information with anyone who may benefit – family members, caregivers, professionals, and individuals with FASD are all invited to attend!
 

When are the next few meetings?

Here are the upcoming Support Series meetings.  Be sure to mark your calendar and join us!
  • December 3, 2021

  • January 7, 2022

  • February 4, 2022

To download a copy of this flyer to print, send to your friends and colleagues, or post on your social media pages, click here.

How can I join the discussion?

To register and receive your virtual meeting link, fill out this one-time registration form.  If you have any additional questions, email us at FASDSS@orchidsfasdservices.org

Do you have a list of resources from the meetings?

As topics are discussed and resources are shared, we’ll keep an ongoing list. You can view that list here.

What have you talked about in past meetings

Glad you asked!  Click open each date’s section to see.

September 10, 2021
News:  
  • FASD Respect Act – contact your Senators and Representative and tell them a litte about your connection to FASD and why we need this act to pass.  Ask them to co-sponser it.  More information HERE.
  • Run FASD – Email photos of your run to Jackie
  • FASD FAMILY PICNIC –  September 25 starting at 12 PM .  EVERYONE is invited.  Bring your own food to be covid-safe.  Fishing, games, and conversation.  Make new friends!  EMAIL me at jwille@orchidsfasdservices.org. If you are interested in attending.  More info to come.  Tentative location:  ROCK RIVER PARK in Johnson Creek.  Find it HERE
Resources:
  • Psychiatrist with Dean Healthcare who is learning about FASD – Dr. Copeland.  Resource from Anne Munson  Anne also shared a news article about police and mental health in the City of Madison  https://www.cityofmadison.com/police/community/mentalhealth/
  • FASD Communities is in the beginning planning stages of a home in Wisconsin for men with FASD.  Contact Gigi at FASDcommunities@gmail.com.
  • Watch and “Like” the 15 minute movie The FASD Project Here  .  Share this with friends, family, and professionals.  If they get enough likes they will work on a longer documentary. – Gigi
  • Gigi shared an article from the NOFAS Roundup newsletter from Bonnie Rubin talking about the need for FASD Awareness.  Read it HERE.
  • Peggy Helmquist shared the following resources from the DHS:  For overall and general Information and referral www.wellbadger,org or 1800-642-7837.  Emergency Care for Children with Special Health Care Needs https://www.dhs.wisconsin.gov/emsc/index.htm and https://www.chawisconsin.org/initiatives/emergency-care/
  • Peggy also shared this:  “The Children’s Committee of the Mental Health Council has focused some attention on Policing in Schools – and those with FASD I would think would have a higher risk in coming in contact with the School Police Laision Officers.”  Contact Peggy to become involved.
  • Sherri shared this resource:  Another resource might be Honestly Adoption www.honestlyadoption.com. Mike and Kristin are adoptive parents of 8 kids, most of who have FASD. They have podcasts, trainings, parent support and coaching and more. Kristin wrote a book called BORN BROKEN that talks about her son who has FASD.
  • Jeff Noble was again mentioned as a valuable resource – his Caregiver support website can be found HERE.  
  • Barb in Bayfield said that her son was recently approved for SSI and that they received a lot of help from ADRC who pretty much did the application for them.  So check with your local ADRC if you are looking for help in applying to social security.
  • Barb also told about an employment readiness program given at her local technical college to train in all aspects of hospitality for college credit.  Check your local technical college for training programs that are appropriate for individuals with FASD.
Topic: “Pro-active Planning for Possible Police Contact for Individuals with FASD – With or Without Underlying Mental Health Issues”
  • Paul Bahr shared his experience contacting the Janesville Police Captain by sending him an email introducing his boys and attaching the 15 minute video “The FASD Project”. He got an immediate response and after meeting with the Captain, Paul and his wife Kim were asked to provide a brief presentation to all 3 shifts of officers. Paul agreed to keep us updated on this evolving story. Contact Jackie or Paul if you want support in contacting your local police department.
  • Other Support Series members shared their experiences contacting their local police department both pro-actively and when a crisis is occurring.
  • A discussion of the use of individualized Law Enforcement Protocols or Profiles ensued. Amy recommended Britt at Elite Cognition in Madison who wrote up a very good protocol for officers to follow for her son.
  • The WI DOC has an “Invisible Disability” disclosure form that can be attached to a state ID or Drivers License database. You can find this form HERE
  • A Safety Plan should be developed with your family by a mental health provider so that everyone knows what to expect when a crisis team or police need to be called – this level of predictability is especially supportive for a person with FASD.
  • Supported Decision Making – is a legal form in Wisconsin that allows an individual with FASD to appoint famiy or friend who will help with crisis and medical decisions. Providers may need to be educated so they will respect your legal right to obtain information and assist with decision making. More information on this HERE. Also recommended is keeping necessary papers and releases all together in a file or folder so it is easy to reach in a crisis situation.
  • There are also a number of resources on the Orchids website HERE and HERE
August 6, 2021
News:  
  • The FASD Respect Act –  we need everyone to write letters to your senators and representative to ask them to support this bill.  You can find information about this bill on the Orchids website.@ www.orchidsfasdservices.org or on the NOFAS website @ www.nofas.org.
  • The RUN FASD Sept 9-16 is a virtual 5K Run for awareness and support of FASD.  We encourage you to get a group of your friends to sign up together, put on your shirts, and run/walk/roll through the town together.  You can also find a link to information about the run on the Orchids and the NOFAS websites.
  • We are planning an FASD Family Picnic on September 25 in a location between Madison and Milwaukee.  Save the date and stay tuned for more information to come.
 
Resources:
Topic:  “Job Coaching for Workers with FASD”
  • Jackie gave a slide presentation she is developing for a NOFAS webinar in October that covered 4 areas:   What is FASD?  Common characteristics and functional issues    Examples and Strategies   Vocational Rehabilitation Agencies
  • Examples, discussion, and strategies included Boundaries and Social issues at work, giving up on services when they don’t succeed, how to support problems at work due to slow processing, abstract vs. concrete thinking, and difficulty learning from mistakes on the job.
July 9, 2021

Our July meeting was devoted to a discussion of the FASD Respect Act, how it could benefit us in Wisconsin, and what we can do to promote it.  Senator Tammy Baldwin’s Staff Aide, Brian Kaplun, attended our meeting, along with Jenn Wishahl, the NOFAS Policy Team Coordinator.  Every Senator and Representative in Wisconsin needs to be contacted and asked to support this bill.  Please check the Orchids page HERE to learn more about how you can support our efforts to get this bill turned into law.

June 4, 2021
Resources:
  • Discussed five areas of need for Support and Resources: Community/Advocacy/Awareness and training/information.
  • Asked people to choose which are they thought would have the most impact and/or felt the most need for increased support in.
  • Arguments were made for the role of Policy Support, and for more information for our helpers, and for more training on what works.
Topic: Using a Developmental not Chronological Age Lens:
  • Group worked on a 3-step process: 1) Select a behavior that is creating or has created problems for someone
    with an FASD 2) Think about the manner and thinking expressed by the person with FASD during this behavior
    and associate it with an age that this manner and behavior is typical of 3) What response is helpful to someone
    in that age range?
  • Example One from Jane: “Mixed maturity” shows up in job situations. Friendly, reliable worker at Walgreens
    and able to stock but not do the multi-tasking, money handling, and judgment needed to be a cashier; able to be
    on time and follow directions doing landscaping, but cannot handle fear of bees; wants to do a driving/delivery
    job but only on a known route and not at rush hour. Suggestion: Would it help to see him as slower in
    developing in some areas and support those areas as you would for a younger person?
  • Example Two from Jim: Excellent swimmer and loves lifeguarding, but wants to take a job lifeguarding that is 50
    miles away and has an old and unreliable car. Does not see a problem. Are we looking at stubbornness or
    dysmaturity? Suggestion: Work with the underlying motivation and support that while also providing support
    for the missing parts in her understanding about the car in order to help her to make it work. Work together
    with her to find ways to make her idea work – as you might a younger child, say an early adolescent.
News and Business:
  • Next Meeting of the WI FASD Support Series will be moved to July 9 because of the July 4 holiday. Same
    time – 1 PM – 3 PM.
  • Next support group meeting for Family Caregivers of Adults with FASD is June 18 from 10 – 11:30 AM. If you
    want to join and have not yet attended any meetings, contact Jackie at fasdss@orchidsfasdservices.org.
  • Support groups for older teens and adults with FASD are still forming and looking for more interested
    individuals. Email us at fasdss@orchidsfasdservices.org for more information.
  • Congressional bill for FASD is moving forward and expected to be introduced into Congress by the end of
    June.
May 7, 2021
Highlights
Resources shared:
  • WIBPDD Training for  “Transition Parents in Partnership”   Website Here:  WSPEI | PIP: Parents in Partnership Click on link at bottom of this website for the flyer.  (from Barb Gadbois)
  • Ann is offering to help with information on supported independent living and DVR process and finding a job coaching vendor through DVR.  (from Ann Linskins)
  • Ira Chasnoff’s Book Club – Free once a month discussion of brain/behavior challenges.  Website here.  Guided Growth Book Club — NTI Upstream (from Jackie Wille)
Requests and issues:
  • Information is one thing…but parents dealing with FASD also need contact with other parents to share frustrations and successes.
  • Families dealing with FASD want opportunities to experience interactions with others that do not always deal with disability issues – such as sports.  Restore a sense of “normality”.
  • How to deal with extended family members who give you unhelpful advice and opinion – cutting off connections and leading to more isolation for families dealing with FASD.
  • How to deal with my own “snarky” comments to person with FASD when he acts – once again – in a way that does not live up to my hopes for “progress”.  What to do instead that is more positive and helpful.
Guardianship and alternatives:
  • Guardianship has long been recommended for families to obtain when a teen with FASD nears 18 years old.  However, recently there is a push to consider alternatives to full guardianship because people have claimed that guardianship (in general) is too restrictive to an individual’s rights and developmental needs to learn how to choose.   
  • Discussion:  Has guardianship been helpful and in what circumstances?  Group members shared ease and challenges in being included in medical appointments and obtaining medical records with guardianship.  Also, applying for Social Security.  Driving?  Employment?  Other spending decisions?
  • Discussion:  How to use guardianship and still maintain the individual with FASD’s rights to make choices and the development of decision-making skills.  Use speaker phone with both on the line.  Simplify what a decision is for, for the person with FASD. 
  • State of WI Guardianship form has 3 levels of support for decision making.  1)  Can make this decision alone.  2)  Can make this decision with support.  3)  Cannot make this decision at all (example:  serving on a jury).  Guardianship is permanent and may be impossible to reverse as it will be difficult to justify how a person who once was incompetent is now competent to make this or that decision.  It is up to a judge.
  • Alternatives to guardianship like powers of attorney (POA) for healthcare or finances, and the WI Supported Decision-making form/law, are not as permanent.  Learn about the WI Supported Decision Making form here.    Learn about Supported Decision-Making in Wisconsin – Wisconsin (arcwi.org)
News and business:
  • Next Meeting of the WI FASD Support Series is June 4 from 1 PM – 3 PM.
  • Next support group meeting for Family Caregivers of Adults with FASD is May 21 from 10 – 11:30 AM.  If you are interested and have not yet attended, email us at FASDSS@orchidsfasdservices.organd tell us you’d like to join this support group.
  • Support groups for older teens and adults with FASD are still forming and looking for more interested individuals.  Email us at fasdss@orchidsfasdservices.orgfor more information.
  • Contacts to Senator Baldwin and Congressman Pocan from Wisconsin to request support for the FASD Bill are happening this week.  We are making an impact!
April 9, 2021
Announcements:
  • Check out the FASD bill being introduced in the U.S. Senate here.
  • We need people willing to tell your FASD story to your U.S. Senator and Representative to help us to advocate for this bill.  Please let us know if you are interested.
Resources to Share:
  • Articles from Jerrod Brown, an FASD expert, on FASD in Criminal Justice, FASD and social dysfunction, FASD and suggestibility, FASD and Art Therapy.
  • Jeff Noble has many free and very helpful podcasts and other programs for Caregivers of people with FASD.  Just google “Jeff Noble FASD”.
  • David O’Connor is a member of the Bad River Tribe in WI and a representative to the DPI.  He might be an advocate for FASD among WI tribal groups.
Requests:
  • Help for someone with FASD going through small claims court.
  • Overwhelm going through the transition process at age 18 – IRIS/Family Care/Social Security/DVR.
  • What do you do with kids who have FASD and can’t work?
  • How do you help a person with FASD to ask for help and accept it?
  • What is going to happen to my child when I am no longer here?
Topics Discussed:
  • Supporting a child/adult with FASD to feel normal in asking for help.
  • Making systems of care accessible for people with FASD – advocating with DVR.
  • Job coaching for someone with FASD.
  • The gap that happens after high school.
  • When eligibility systems refuse you because your IQ is too high for services.  (What is the definition of “developmental disability”?  See here.)
Plans for the Future:
  • A new topic group meeting event to discuss and share the challenges of “navigating the drop-off” when someone with FASD turns 18.  Tentatively scheduled for an as-yet-to-be-determined Friday at 4 PM.  Details to follow.  
  • Next Family Caregiver support group meeting is Friday, April 16, at 10:00 AM.  If you have not attended before, contact us to be given the link to the meeting.  If you have attended or asked to join, the link will be sent out the day before.
  • We are recruiting women to join a social/educational support group for women with FASD (age 17 and up).  Please contact us for more information.  
  • Next FASD Support Series meeting will be the first Friday of May, which is May 7.  From 1-3.
February 5, 2021
Highlights
 
Resources shared:
  • Disability Benefits access through ADRC, CYSHCN, CLTS, and SSI/SSDI were discussed.  See resources page here for more information.  Questions about when to apply for Social Security for a young adult.

 

Issues shared:
  • Educating your provider about FASD – where to find FASD educational resources for providers and how to approach them without offending them
  • Dealing with young adults with co-occurring mental health and behavioral issues – spending time in hospital and jail.
  • LSS Family Partnership Initiative
  • Challenges when I have FASD as a high schooler looking toward the future
  • The FASD Project (www.fasdproject.com) – report on an in-progress documentary on FASD with interviews of people in our group
  • Post high school vocational programs – Project Search, DVR – for young adults
  • Challenges with electronics, young adult – safety, impulse control
  • Challenges in creating realistic expectations for and with young adult
  • Shepherd’s College, Kenosha area, WI
  • Lack of internal motivation, structure for young adults
  • Perseveration challenges
  • Young adults/adults with FASD struggling to admit they need help, not wanting to talk about their FASD
  • Guardianship – is it helpful?  When to do it?
  • Challenges for psychiatrist – no consistent diagnostic code.  Difficulty getting colleagues to diagnose or recognize FASD
  • Discussion of DBT and other treatments – do they work?  Do they need to be modified before they work?
  • Importance of focusing on strengths and assets – what people with FASD do well.
  •  
March 5, 2021
Highlights

 

Resources shared:
  • Challenges to families of people with FASD, the difficulties of transition, and DOT IDs were discussed. See our updated list of resources here.
Issues shared:
  • How to find resources for adults — SSI, Adult Long Term Supports, DVR
  • Guardianship and power of attorney, pros and cons
  • Financial and medical supports for adults
  • Diagnosis of FASD, neuropsychological evaluations, functional behavior evaluations — how are they useful in adulthood?
  • Challenges for adults with FASD in accepting or asking for help
Suggestions for this group:
  • Include time just for emotional support
  • Bulletin board for members of this group to share needs and resources with each other
January 8, 2021
Highlights
 
Resources shared:
  • Peggy shared a number of resources.  See our updated resources list here.

 

Issues shared:
  • Managing either IRIS or Family Care – system is confusing and frustrating

  • Work-related challenges, employer relationships

  • Constant use of cell phone

  • Dealing with anger and frustration in older adults with FASD

  • Self-esteem, grandiosity – realistic expectations by and for an adult with FASD

  • Keeping up with the conversation with people my age

  • Finances – how to manage financial issues for someone with FASD

  • How to be on the same page when my concerns are not the concerns of the person with FASD

  • How to find healthy and engaging activities for someone with FASD

  • Use of pot for people with FASD – is it self-medicating?

  • How to get a diagnosis in Wisconsin for an adult with suspected FASD

 

Creation of a Support Group for Family Caregivers of Adults with FASD
  • Meets virtually the third Friday of the month from 1:30 – 3:00 CT
  • Potential future topics include jobs, friendships, communication, goal-setting and motivation, realistic expectations, financial, family dynamics & relationships, future planning, safe living situations, legal supports, care mechanisms like guardianship/POA for healthcare/trusts
December 4, 2020
Highlights:
  • Explored a chart for identifying the brain basis for behaviors and how we can change our responses. Discussed the importance of acknowledging and understanding the emotions of the person with an FASD in this process
  • Other discussion topics covered:
    • Developing skills to better understand and express emotions 
    • improving employer/employee relationships 
    • holding a job; 
    • self-advocacy 
    • trauma-informed therapy/yoga 
    • learning programs to help with memory and retention – suggestion included making learning fun; identifying interests and facilitating learning through them; movement oriented learning like swinging, horseback riding 
    • Looking for young adult groups for people with FASD to connect and share resources and experiences
Questions:
  • How to hold a job? How to be more (or less) transparent with employer about disability? How to voice needs with employers? Self advocacy?
  • How to improve learning skills in young children with an FASD?
  • How to acknowledge and listen to the emotions of a person with FASD as we work on behaviors with them?

 

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