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: Interrupting Conversation

Hearing Their Voice

FASD 2016

FASD 2016. Speak Up, and make this year the last year for FASD.

FASD: Interrupting Conversation. Many individuals with Fetal Alcohol Syndrome interrupt when people are talking. Often the interruption is loud and urgent with no similarity to what is being discussed. Feeling ignored, they intrude on others’ conversation to attract attention, but they are then left wondering what to say. If the people initially speaking are unaware of their mental disorder, they see this intrusion as annoying.

FASD: Interrupting Conversation

But, such an intrusion should be managed with a smile and an invitation to join in the conversation. The initial discussion can be resumed later when the individual is reassured they are not being ignored. Feeling overlooked can frighten an individual with a mental disorder as it can be perceived as permanent; hence, their anxious interruption. But, when the attention is turned toward them, they panic equally over the limelight and expectation of having something important to say. This often results in them blurting out a triviality or even nonsense. It is, of course, then up to the able-minded person to take what is said and run with it to make a conversation, thereby putting the individual at ease and assured what they say is important.

FASD: Interrupting Conversation

When speaking with an individual with FAS or any mental illness, avoid asking questions as they can become frustrated at not knowing how to answer. Instead, say something along the lines of—“It is very cold today. I need to make sure I wear my hat and gloves when I go out. I noticed that you have gloves in your pocket; good for you. That’s a wise decision.” But don’t expect an answer, rather a reaction, as the child will most likely pull the gloves from their pocket and put them on. Then you can say—“I like your gloves. They look very warm. I have nice gloves too. Look at the snowflake on the front. I chose them because I particularly like snowflakes.”

At the time, you might think your conversation was meaningless to the child, but you can be assured that next time he/she is bought gloves, he/she will insist they have snowflakes on them—just like the snowflake man/woman that you will be remembered as.

The simplest kind act of chatting and laughing with a child with FAS can have an enormous positive outcome, so don’t think your time has not made an impression. By the same token, shunning or ignoring the child influences them negatively.

Download for FREE my two memoirs:

Two Decades Of Diapers

Fetal Alcohol Syndrome: The Teen Years

from my website

http://www.twodecadesofdiapers.com 

Two Decades Of Diapers

Barbara Studham’s memoir: Two Decades Of Diapers

Two Decades Of Diapers. Are you an individual with Fetal Alcohol Syndrome, or a caregiver/support worker to an individual with FAS? Are you considering adopting or fostering a child with Fetal Alcohol Syndrome? Or are you a reader simply interested in the effects of mental illness. If so, then for these, and many other reasons, Two Decades of Diapers is essential reading. During my twenty years of single-handedly raising four grandchildren with Fetal Alcohol Syndrome, the temptation to run from this often uncontrollable mental illness and all the struggles it brought into my world, was significant. Despite my grandchildren’s strengths, their Fetal Alcohol Syndrome caused severe behavioral issues, eventually overwhelming my parenting abilities resulting in a breakdown of the family unit I had fought so hard to maintain. Offering an insight into the challenges of FAS, Two Decades of Diapers is a down-to earth, no holds barred reference to the struggles associated with mental illness. In my memoir, I describe the challenges my adopted daughter with FAS endured, her teen pregnancy, how I became a grandmother raising grandchildren, and the crises, shattered dreams, and strength and love we share. FREE to download! Also available in paperback from http://www.twodecadesofdiapers.com.

FAS: The Teen Years

Now Available: Fetal Alcohol Syndrome, The Teen Years. Barbara Studham’s memoir sequel to Two Decades Of Diapers

Fetal Alcohol Syndrome: The Teen Years.  Fetal Alcohol Syndrome: The Teen Years is the sequel to my first memoir: Two Decades Of Diapers. In each memoir, I give insight into how family life can be ruthlessly disrupted by behavior disorders caused by Fetal Alcohol Syndrome: a mental illness caused by pre-natal exposure to alcohol. I spent twenty years raising grandchildren with FAS. Through my wealth of experience with the disorder, I lead the reader through my desperation, fears, hopes, and prayers while coping with my grandchildren’s teen years.

However, I would be the first to admit that while FAS brought a whirlwind of emotions into my life, my grandchildren’s struggle to cope with mental illness far outweighs any trauma I have endured. Often labelled defiant, odious, caustic, and wayward, individuals with FAS are more victims of brain damage overwhelmed by the demands of everyday life, than the disposable people society deems them. If you are an individual considering adopting or fostering a child with FAS, a mental health worker, or someone who is interested in learning more about this distressing disorder, then Two Decades Of Diapers, and, Fetal Alcohol Syndrome: The Teen Years are essential reading and FREE to download from my website: http://www.twodecadesofdiapers.com

See my Fetal Alcohol Syndrome playlist on Youtube.com


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FASD: Different, Impossible, Disregarded

Feeling Left Out!

FASD 2016

FASD 2016. Speak Up, and make this year the last year for FASD.

Many individuals with Fetal Alcohol Syndrome experience isolation through societies’ apathy toward those with mental disorders. FAS is not always recognizable through physical differences, so when a child’s behavior is seen to be unpredictable, they are often labelled as different. Because people are afraid of different, the needs of children with FAS often get overlooked, or worse, disregarded.

FASD: Different, Impossible, Disregarded

While raising my four grandchildren with FAS, I witnessed people disregarding their needs and their being treated as unemotional beings with no need of inclusion in social activities. But, those to be pitied were not my grandchildren but the people (mostly adults) who misunderstood the mental disorder and saw my grandchildren as trouble. It appeared to take only one wrong step on the children’s part before they were considered impossible and therefore a lost cause.

FASD: Different, Impossible, Disregarded

Including children with FAS in neighborhood activities gives them a sense of belonging but, so often, neighbors ignore this need out of fear of losing control over the activity. To avoid losing control, if you know of a child in your neighborhood with FAS, or other mental illness, and would like to include them in an activity such as your child’s birthday party, considered inviting both the child and the caregiver to the event. Advanced plans made with the caregiver, should anything untoward happen during the party, will offset your fear of losing control. Be aware that loud noises and gatherings can overwhelm a child with FAS, so a shorter length of time for the child to attend the party would make sense; preferably missing the first half-hour when all the kids are arriving, and definitely the time when caregivers are arriving to pick up their children. Simply plan to have the caregiver slip quietly out with the child, but do remember to leave out a party loot bag for the child to enjoy at home, and a phone call to the child expressing your delight at having had them attend will make them feel special. It is called planned inclusion and will boost the child’s confidence, and give them a sense of belonging.

My Websites:

www.challengedhope.com

www.twodecadesofdiapers.com

My Books, available from:

http://www.twodecadesofdiapers.com

http://www.amazon.com/author/barbarastudham

https://www.store.kobobooks.com

http://www.barnesandnoble.com

Other fine ebook distributors

 

 


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FASD FACT: No Cure

Did you know there is no cure for FASD (Fetal Alcohol Spectrum Disorder)? When the fetus brain is damaged by alcohol during pregnancy, it cannot be reversed. Some moms drink while unaware they are pregnant, others drink during pregnancy out of ignorance of the danger, others knowingly drink alcohol during pregnancy due to addiction. Let’s get the message out that no amount of alcohol during pregnancy is safe. FASD is a life sentence. #FASDFACTS. See my memoir: Two Decades Of Diapers. Available at http://www.twodecadesofdiapers.com. Also at Amazon, Kobo, and other fine ebook distributors.