Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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FASD Marathon

Get Your Running Shoes On

Running An FASD Marathon!

 

 

 

 

 

 

 

I once heard it said that raising children with Fetal Alcohol Spectrum Disorder is like running an FASD marathon. At the time, I wasn’t quite sure what the individual meant but, as my grandchildren with Fetal Alcohol Syndrome progress through their teenage years, I now know exactly what it means:

  • RUN one step ahead of them. Know their moods. Recognize the onset of a meltdown.
  • EXPECT setbacks, but FORGE AHEAD.
  • Know this takes STAMINA and FOCUS and diminishes ENERGY.
  • PLAN A STRATEGY to prevent losing to their defiance.
  • Stay ON TRACK.
  • STAY HEALTHY so you can cope with the behaviors waiting to TRIP YOU UP.
  • Don’t FALL, never FAIL, NEVER GIVE UP.
  • KEEP YOUR EYE ON THE FINISH LINE; only when night falls can you say you WON.

You see, it is a marathon. So get on those sneakers and start running! I’m sure many caregivers of teens with FASD can come up with more tips on winning the FASD marathon. So, let’s hear them. Please leave a comment.

Please check out my memoir: Two Decades of Diapers, and my other books at:

 


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There’s a New Group in town!

Over the past few years, first cities, now countries are becoming more tolerant of LGBTQ individuals. It is wonderful to see how accepting communities can be when they open their minds to groups or individuals who are considered minorities, undesirables, or less vital to the community.

But there is another group in town who, for many years, has been overlooked in the acceptance department. They are the FASD’s who, like LGBTQ’s, struggle to maintain an identity.

Why? Because persons with Fetal Alcohol Spectrum Disorder are considered less valuable than those who don’t struggle with mental illness and are therefore disposable. Yet, despite their struggles, with proper supports, such individuals are equally capable of contributing to society in positive ways. And not only to society, but to people involved in their lives.

For example, having been sole caregiver to one daughter, and four grandchildren with Fetal Alcohol Syndrome over a span of three decades, I am not the person I was before parenting. Due to a difficult childhood, I was withdrawn, had few goals for my life, and cared little for others. Now, I advocate for individuals with FASD through speaking engagements and my memoir: Two Decades Of Diapers. I search for resources for my grandchildren to get them the best support they deserve; I blog on FASD (www.challengedhope.com) and have a website on FASD (www.twodecadesofdiapers.com), all in the hope of raising awareness about FASD. Awareness leads to eventual acceptance, so those who struggle with the disorder will no longer need to hang their heads in shame. Tolerance of FASD is long overdue. Let’s start opening our minds to mental health disorders today.

My memoir: Two Decades Of Diapers is available in paperback and ebook from:

Also available in ebook format from:


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Event: Group for FASD Youth & Siblings

A very successful group for youths 10-20 years of age with FASD, and their siblings, has opened up in Hamilton, Ontario.

Founders, Mark Courtepatte and Savanna Pietrantonio had this to say—

“To the best of our knowledge, we believe that this is the first Youth & Sibling Support Group in Ontario … and possibly Canada, or the world!  There are a lot of groups that have the youth and siblings join with the parents and caregivers (as we do with our parent and caregiver support group), however we believe this is the first group solely focused on supporting youth with FASD and their non-FASD siblings.  It is just for them!”

Some of the goals set for the group:

  1. Providing an environment that will allow youths with FASD to feel comfortable, normal, and accepted. They will be with peers and other youth who share a strong commonality.
  2. Allow youth with FASD to make friends with peers more likely be more open and understanding.
  3. Help youth to learn and better understand FASD together.
  4. Have fun!

For more information on the FASD Youth and Sibling group in Hamilton, Ontario, please visit www.hamiltonfasdsupport.ca or email: Hamilton.FASD@gmail.com

****

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

Available in paperback and ebook from:

Also available in ebook format from:


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Sensory Issues

Every so often, I discover an interesting blogger who has experiences to share. One such person can be found at http://www.21andsensory.wordpress.com. This blogger addresses her Sensory Processing Disorder (SPD), and because my grandchildren with FAS struggle with sensory issues, I found her tips helpful and informative. To encourage her to share her experiences and get the word out about sensory issues, please visit her website and leave a supportive comment. We need more people with sensory issues to blog, as it’s a topic discussed far too infrequently, yet sensory issues can have a profound effect on peoples’ lives.


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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.

Available in paperback and ebook from:

Also available in ebook format from:


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Grandparents raising Grandchildren

In Ontario, a growing number of grandparents are raising their grandchildren. Government officials need to get their heads out of the seventeenth-century sand when it comes to the ability of grandparents to do so. Not all grandparents are able to raise their grandchildren and, if the child has a mental or physical infirmity, it can be nigh on impossible. It is not always in the best interest of the child to be placed with the grandparents.

Grandparents are often taken advantage of when at their most emotionally vulnerable—when they learn their grandchild is in need of a home. There is a necessity for the increase of available homes where the child can be nurtured by young caregivers who have energy and use contemporary parenting strategies.

Stop the foster care propaganda—not every child placed in care is subject to abuse. My personal experience with foster parents has been positive. There are many compassionate foster parents in Ontario willing to give children the care they need and deserve.

Let grandparents be grandparents.

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

Available in paperback and ebook from:

Also available in ebook format from:


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Event: Hamilton, Ontario

On Saturday, May 30 at 10:00 am, I will be speaking at Hamilton FASD Caregivers Support Group about my experiences while raising grandchildren with Fetal Alcohol Syndrome. For details, please visit this link: http://hamiltonfasdsupport.ca/10.html. Hope to see you there!

My memoir: Two Decades Of Diapers describes my twenty years raising grandchildren with Fetal Alcohol Syndrome. Available in paperback and ebook from:

Also available in ebook format from:

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