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:

• Amy offered to share her efforts to find respite for a young adult with FASD.  She is working with the Respite Care Association of WI @  respitecarewi.org and their registry.
• Gigi shared her news about their home for women with FASD in Platteville and their potential new home for males with FASD.  She also invites us all to view and share the short film called “The FASD Project” which promotes FASD awareness and includes interviews of people with FASD and their caregivers.  You can find it here  thefasdproject.org.
• Jackie share the following resources related to employment and FASD:
  — https://askearn.org/topics/neurodiversity-in-the-workplace/
  — askjan.com
  — http://www.orchidsfasdservices.org/info-vocational-rehabilitation-and-employment

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.

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.

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!

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.

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.
•  

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

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

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?