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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FASD Day, September 9th

It is FASD Day on September 9th!

FASD Day, September 9th

September 9th each year is FASD Day to promote awareness of the disorder

 

September 9th of each year is FASD Day. Someone recently texted me to ask if I was doing anything special to promote awareness of FASD on this special day. To my shame, I could not generate one idea of how to highlight FASD, the most preventable form of mental illness. For twenty years, I have raised grandchildren with FASD, so I cope with the disorder on a daily basis, but to create an advocating event, for me, proved impossible due to time and financial limitations.

So, today, September 9th 2015,  I am relying on this blog to advocate for me. It’s where I post content about FASD. Although getting people to read it can be a struggle in itself. To give you an idea of that struggle, take note of what happened regarding my previous blog post.

As a blogger advocating for FASD, I naturally joined Facebook groups to find members who do the same. And, when my teenage granddaughter, who has FASD, offered to advocate for students with FASD through strategies for teachers, and allowed her strategies to be posted on this blog, I was ecstatic. Is this how it works?—I thought—one person raises, the next generation advocates? Perhaps my twenty years of overwhelming stress is finally paying off!

FASD Day, September 9th.

Excited over her contribution, I turned to one FASD advocating Facebook group that boasts over seventeen thousand members, to post a request for members to read my granddaughter’s strategies then offer her encouragement to continue advocating. Naturally, I hoped they would also “share” or “like” the post, but a supportive comment would have sufficed.

No, I didn’t expect seventeen thousand people to respond to my blog post, but one would have been nice. But the reaction was a disappointing zip! Last time I checked, there were two comments, not from members of the Facebook group, but from friends who care. Of course, I appreciate their supportive comments, but where are the advocates? Isn’t that what FASD day is all about—promoting and advocating? If not one in seventeen thousand advocates are interested in supporting a newbie advocate like my granddaughter who struggles daily with FASD, why would we expect people who know little to nothing about FASD to show interest in the topic?

This turning of backs by people on the front line needs to end. So, fearing I might become one of them, while it is too late this year, I promise to promote awareness of FASD on FASD Day, September 9th 2016! Please join me!

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http://www.twodecadesofdiapers.com

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http://www.barnesandnoble.com

Other fine ebook distributors


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FASD Feelings

Kids with FASD often believe their feelings or opinions are worthless, therefore it’s important to distinguish and label emotions so the individual can more easily recognize and express their feelings.

http://www.fasd.alberta.ca offers a booklet titled: FASD Strategies and Solutions. There I found a page on Feelings and Emotions which reads: “…. teach emotions in a concrete way (e.g. smiling means happy).”

  • A “check-in” time for internal feelings will help in stating which feelings are physical and concrete.
  • After an outburst, talk about what your child felt during the meltdown; for example, a beating heart, sweaty hands, hot face. Attach the concrete feeling to the meltdown so she can begin to identify what feelings are connected to certain behaviours.
  • In order to be able to act appropriately to any emotion, your child must first have some way to recognize concretely what she is feeling. That feeling must then be named and “rules” for appropriate reaction to that feeling must be made.
  • Create a “feelings” dictionary, using line-drawings of complete stick men rather than just facial expressions for those most common feelings the child is likely to experience. A complete body can show more than just a face and is much easier for the child to associate with what he is feeling. Have one emotion per page.
  • Always name emotions very clearly. With teens and adults, name the emotion first and then follow with the words their friend’s use (“angry” vs. “pissed off”).
  • To encourage emotional expression, use a gingerbread man outline drawing and simple colour codes (e.g. red for anger, blue for sad, yellow for happy, and gray for blank). Have your child colour on the gingerbread man where he has those feelings. This can give you a quick and immediate idea of the state of emotional health (e.g., red in the head and the hands is a good indicator of being ready to “lose it”; gray in the head and on the body is a good indication of being “shut down”). this will help, especially when the child is not able to verbalize her thoughts and feelings.
  • Once the feeling is identified correctly, have a simple plan to help the child. For instance:
  1. “Losing it” – use calm down technique.
  2. Caregiver is “ticked off” – stand still, look at caregiver and listen.
  3. “Tired” – lie down and rest.
  4. “Frustrated” – have a list of physical activities that she can do and have her choose between two.
  5. “Angry” – express it physically in a previously identified acceptable and safe manner.

Do not expect: 

  • Insight
  • Application of yesterday’s learning to today’s experiences
  • That the child will remember a feeling from one time to the next without support.

The child will not necessarily be able to understand the emotions of others just because we were not able to help her understand her own.

 

 


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FASD Teens forming Friendships

Teens with FASD often struggle to form friendships, so it is vital they interact with other teens who face similar challenges. My teen grandchildren are enrolled in a Comprehensive Class at school which affords them the opportunity to find friends among their classroom peers, while experiencing friendships with non-disabled peers via the school’s Best Buddy program.


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Understanding Teenage FASD

With the exception of my youngest granddaughter, my grandchildren are now teenagers. While I appreciate the extra time I now have to explore my own identity after years of discovering my children’s and then my grandchildren’s, raising teens with FASD is not much different from raising youngsters with FASD. Both stages bring their own fun times, surprises, achievements, challenges, and stress, but one thing I’ve noticed with FASD teens is their struggle to achieve independence which, of course, raises concerns over what happens when they eventually leave home.

With guidance and support, non-disabled teens usually achieve independence, but FASD teens need guidance and support just to get through each day. Without that support they can become disoriented and anxious, unsure of what step to take next, especially regarding daily routines like bathing, brushing teeth, regular meal times, laundry, managing allowance, etc; all aspects of life necessary for successful independence.