Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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FASD: Changing Viewpoints

That Was Easy!

This is a long post, but anyone caring for an individual with FASD will find it encouraging!

FASD: Changing Viewpoints. 

I recently invited three friends to attend the Hamilton (Ontario) FASD Caregiver Support Group, hosted by Mark Courtepatte and Savanna Pietrantonio. The group meets on the last Saturday of each month, and is attended by caregivers and guardians of children and teens with Fetal Alcohol Spectrum Disorder. Its informal environment allows for the exchange of frustrations, references to services, discussions of prayers, hopes, and dreams for the children, the release of anxiety, and the reassurance that one is not alone in raising children with FASD.

On my invitation, my friends graciously agreed to attend. Though they knew little of FASD going in, when the session began, it took only minutes for their eyes to be opened to the realities of Fetal Alcohol Spectrum Disorder, and how it plays out for the majority of families. Here, in my friends’ own unedited words are their thoughts on how that group meeting affected them.

Heather… “Glad you could make it,” said Barbara, as I walked into the conference room and took a chair beside her.  Barbara had invited members of our writing group to attend her monthly group support meeting. It was my first time at an FASD meeting. I thought I knew what to expect. The room soon filled to the brim with parents, grandparents, and young teens. A family sat next to me; Mom, Dad and two daughters. The girls were loud, boisterous, and unsettled.  They twirled in the rotating chairs, bumping my chair as they fidgeted. They couldn’t sit still for more than a few minutes. When the meeting began, they giggled and talked to each other, instead of keeping a “respectful” silence.

Wow, I thought to myself, if these girls acted like this in church, or at a school play, or somewhere else, I would have ‘tut-tutted’ and been annoyed their parents didn’t discipline them. Maybe I would have thought they had ADHD. I may have assumed the girls had not been taught “civilized” manners by their parents. But because I knew their condition, I simply sat quietly and accepted them.  I didn’t know much, but I knew FASD children had behavioral issues.

However, I didn’t know those girls were jumping out of their skins in that conference room. I didn’t know that crowds, loud noises, changes to daily routines and strangers made it impossible for them to remain quiet. I didn’t know they left the room to get relief from the atmosphere they were in. I didn’t know it was a coping mechanism they used to keep themselves from unraveling. It seems I knew little to nothing about the behavioral issues of FASD children.

I soon learned how difficult the job of an FASD parent is. Discipline, I discovered, is the exact wrong thing to use. Yelling at a child with FASD increases the problem. Quiet reasoning, understanding and respect are required. Repetition is necessary to teach daily routines and consequences. Vigilance is needed to keep the children safe, because FASD kids lack the ability to fully understand the ramifications of their actions. I had no idea the strength and tenacity it takes to be a parent of one of these children.

“The mental healthcare system needs major training in the area of FASD treatment,” said the facilitator of the group. “Misdiagnosis is rampant. Doctors often lack the knowledge to differentiate FASD from ADHD, autism, and other conditions. Medications used to treat these other conditions are drastically wrong for kids with FASD. Changes are coming slowly as the medical field starts to understand what parents of FASD children have been saying for years.”

How was it possible that doctors knew little more than I did? And not only doctors! Teachers, caregivers, social workers and adoption agencies are woefully under-educated about this syndrome. The public, too, is drastically uninformed. Changes are coming in these areas, but once again, time is crawling by. Parents are left to lobby for funding and assistance, to educate the public and to support each other until the changes come. Parents and children of FASD have been suffering alone and misunderstood for decades, perhaps for centuries. I say centuries, because I also learned that FASD can manifest itself in a child across three generations. And the condition can come through the father or the mother. I had often misjudged mothers of FASD children. I thought I knew it all about those mothers. They must have drunk alcohol throughout their pregnancies. How could they be so careless, selfish and neglectful?

Well, guess what? Even one drink may be enough to cause FASD in an unborn child!  And that drink may have passed the lips of the mother or the father. I was astounded to learn that any of us on the earth could be affected, since it is certain that very few had parents, grandparents or great-grandparents who never imbibed a single glass of alcohol. No, I didn’t know much about FASD at all, until I attended that FASD support group. I listened in awe to the stories, challenges and advice discussed by those who are passionate about and affected by FASD. I learned a lot. But, the most important thing I learned is that it is so very easy to pass judgment while living in a world shrouded in ignorance.  It’s a lesson I won’t forget… Heather.

Viga… I recently attended an FASD group meeting that dispelled any illusions I had about the long-term, very harmful effects of drinking alcohol while pregnant. I was unfamiliar with FASD until I read Barbara Studham’s remarkable book, “Two Decades of Diapers”. What I read there both concerned and shocked me, especially since I have a teenage granddaughter who has always exhibited many characteristics of FASD children. As so many parents and doctors do, I had put her often-upsetting behaviours down to ADHD and/or Dyslexia.

After attending the FASD support group, my suspicions were confirmed: I learned that a mother, even having just one drink when she doesn’t yet know she’s pregnant runs the risk of having a child with FASD. Sadly, I now have to conclude that my dear granddaughter may indeed be an FASD child, not ADHD. At that meeting, if was further upsetting to learn from parents of FASD children that the medical profession is far from enlightened about FASD and prescribes meds for ADHD instead. This is unacceptable!

My friend, Barbara Studham’s books: Two Decades Of Diapers, and, Fetal Alcohol Syndrome: The Teen Years, will shed much needed light on this issue. I highly recommend that groups interested in knowing more about FASD read Barbara’s books. This is a woman who has lived with what she now writes about to help others. Invite her to speak to your groups. The child you help may well be your own… Viga

Karen… My knowledge of FASD was very limited until I had the opportunity to visit a meeting of the Hamilton FASD support group. I learned that although most children with FASD ‘look normal’ they do have issues with attention span, behavior and authority. I also learned that there are various degrees of FASD and that all have been recently acknowledged under the umbrella of FASD. Some children with FASD are very bright and do well in school academically but are emotionally exhausted by the end of the day resulting in ‘melt downs’ at home. These children require a lot of ‘one-on-one’ sessions to understand and control their outbursts. Others are bullied because they don’t fit the norm and have learning difficulties.

It was interesting to see the working companion FASD dog in-training brought to the group by an attendee with FASD. This puppy was progressing so well that he diffused two melt-downs during the meeting. This dog had just returned with his trainer from an FASD conference where, we were told, he sat patiently through the full two days of meetings.

All the parents attending the support group appeared to be adoptive parents who were championing for these children. They are advocating for diagnostic testing, support to work with the children, and education of the public. This was relevant for me as I’m involved with a Youth Leadership Program and need to be aware of the possibilities affecting personalities… Karen.

Changing Viewpoints

From the above comments from my friends, you can imagine my delight at their learning so much about FASD from only one group meeting. This proves that getting information out on FASD is vital. So let’s get it in the medical community; schools; the workplace; on social media; in women’s group; community meetings, and anywhere else possible! Tell your friends, family, colleagues, and anyone else you know about the problems related to drinking alcohol during pregnancy.

If you would like more information on the Hamilton (Ontario) Caregiver Support Group, please visit this website:

Hamilton FASD Parent & Caregiver Support GroupWebsite:  http://hamiltonfasdsupport.ca 

email: Hamilton.FASD@gmail.com 

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Events

Following are updates and news of upcoming events from Hamilton (Ontario) FASD Parent & Caregiver Support Group

eMail:      Hamilton.FASD@gmail.com

Website:  http://hamiltonfasdsupport.ca

  1. June 27thSupport Group Meeting Location & Guest Speaker Nancy Hall

As per last year, our summer meetings (starting June 27th) are held at the Williams Waterfront Café.  Please refer to our support group website Meeting Info tab for further information http://hamiltonfasdsupport.ca/5.html

ALSO, we are pleased to announce that our Guest speaker for our meeting will be Nancy Hall; Fascets Canada.   Nancy will provide a brief overview of Fascets Canada and the Neurobehavioural Model.  Link:  http://www.fascetscanada.com/  FASCETS Canada is a satellite agency of the original FASCETS in Portland, Oregon, and continues the work of FASD expert, Diane Malbin.  FASCETS Canada provides training, education and consulting services in the Neurobehavioural Approach for parents and professionals, to support the development of effective, brain-based, person-specific accommodations.  Please refer to the Support Group Events tab for further info.

  1. May 27thSupport Group meeting

We had a great meeting!  We were very honored to have Barbara Studham speak to our group about her challenges raising 4 grandchildren with FASD and her memoir “Challenged Hope” (It is actually titled: Two Decades of Diapers– my words).  The members were able to obtain copies of her memoir at the meeting.  Again our sincere thanks to Barbara!

    3.   Youth & Sibling Support Group

A brief update – we mentioned at our May support group meeting that we had an initial meeting to discuss the plans for our separate support group for youths and siblings.  We had another meeting to finalize the plans.  We anticipate that the meeting will be held at the Dundas Baptist Church (same location as the RJ Formanek event).  We anticipate that the first meeting will be very “light” (more a greet and eat for the initial meeting) to allow everyone to get to know each other a bit!  The first meeting will be approximately 1 hour.  The first meeting date is pending confirmation (more to follow)

  1. Training Updates

The Hamilton FASD Community Resource Team fall/winter training programs

** Sincere thanks to Brenda McBride CFS for providing the info

Note: The info has also been added to our Support Site Training tab.  Advance registration is required.  Cost: $0 for caregivers.

FASD Part 1 – Three Part Training Program

October 6, 2015 Series 1: The Basics: Understanding FASD

October 13, 2015 Series 2: FASD Intervention Principles—Best Practices “What to do when…”

October 20, 2015 Series 3: Advocacy-Promoting School Success and Transition to Adulthood

http://fasdhamilton.ca/wp-content/uploads/2015/06/Flyer-for-Hamilton-FASD-training-October-2015.pdf

FASD Part 2 – Three part Training Program – Next Steps

** Please note to attend this session, completion of Part 1 FASD Training is required.

November 10, 2015 Session 1: Grief and Loss

November 17, 2015 Session 2: Strategies and Interventions

November 24, 2015 Session 3: Transition to Adulthood

http://fasdhamilton.ca/wp-content/uploads/2015/06/Flyer-for-Hamilton-FASD-training-Part-2-November-2015.pdf

  1. SEAC Meeting

Jeff Gowland and I attended the SEAC meeting on June 10th.  This was the final SEAC meeting until the fall.  We reviewed their 2014/15 Special Education Report.  It is an extensive document (109 pages).  The report reflected a number of changes to enhance FASD support and awareness.  Worth noting, at the May 27th meeting we had shared information on FASD diagnosis challenges as well as the recent research on the effect of a glass of wine stopping the fetus from breathing and moving for up to ttwo hours (see our site for the research).  The SEAC chair Judy Colantino mentioned to me after the meeting that one of the school trustees had read the effects of a glass of wine research and asked that the information be included in the sex education program!

  1. Kids Bowl for the summer for free

Registered kids age 15 and under receive 2 free games of bowling every day for the entire summer (value $500).  Note that registration is required.  Bowling shoes (+cost) also required.  * It may be worth purchasing shoes if you plan to use the program for the summer!  (our sincere thanks to Jeff G for the info)  Link:  http://www.kidsbowlfree.com/canada.php

  1. Hamilton Police Service FASD Awareness

We are pleased to announce that Jeff Gowland prepared a 10 page PowerPoint slide deck on FASD that was distributed to the entire Hamilton Police Services!  This will have a tremendous impact on their awareness of FASD.  Congratulations Jeff on a job well done!!  ** I am attempting to add the presentation to our site – encountering challenges.  Will continue trying!

  1. Support Group Website Changes/New Info
  •   Meeting Info location and Guest Speaker (Meeting info tab)
  • .Event – Nancy Hall Guest speaker (Events Tab)
  • .FASD is a Disability not a Behaviour video (Useful Info / General tab)
  • .Obtaining an FASD diagnosis (Useful Info / Support websites tab)
  • .Respite Services (Useful Info / Support Websites tab)
  •  kids Bowl For Free (Useful Info/General Info tab – Summer Items

Thanks to Mark Courtepatte and Savanna Pietrantonio, founders of Hamilton FASD Caregivers Support Group for the information for this post.

eMail:      Hamilton.FASD@gmail.com

Website:  http://hamiltonfasdsupport.ca

*****

 My memoir: Two Decades Of Diapers describes my twenty years raising grandchildren with Fetal Alcohol Syndrome.

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