Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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FASD VOICES

New Book: FASD VOICES

I am writing a new book titled (tentative) FASD VOICES, as I want to bring the voices of individuals with FASD, their caregivers, siblings, caseworkers and anyone else involved with FASD, to the global forefront. I have written two FASD memoirs Two Decades of Diapers, and, Fetal Alcohol Syndrome, The Teen Years. I also created the Strawberry & Cracker, Twins with Fetal Alcohol Syndrome, picture book series. 

The response so far regarding FASD VOICES has been positive and I hope to continue that momentum. So, if you are a person involved with FASD in any way, and would like your voice to be included in FASD VOICES, please use my contact page in the MENU bar and I will send you details. 

This book will make an excellent handout at FASD conferences, FASD presentations, to politicians, medical personnel, FASD caseworkers, teachers, etc., but it can’t be written without YOUR help. I need to hear your FASD experiences, challenges, struggles, hopes, prayers, positive and cherished moments of FASD, vents, needs, wishes, etc.  If you have an anecdote, comment, thought, idea, or any other voice you want heard, please contact me.

Pieces should be 50-500 words. Don’t worry if you have never written anything before. I want to keep it raw. Only your first initial of your name, and your province, state, county etc, will be shared. When complete, FASD VOICES will be available from Amazon. There is no pay-out to participants as all profits will go toward printing costs for books to be handed out at presentations. 

ASK YOURSELF — WHAT DO I WANT THE WORLD TO KNOW ABOUT FASD?

PLEASE CONTACT ME IF INTERESTED!

 

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FASD: Childhood Memories

Many children with FASD have fond memories of their childhoods.

Despite the challenges and struggles associated with parenting a child with FASD, the child will often remember their childhood with fondness. Despite the child’s complex behaviors involving meltdowns; screaming, and defiance, which the caregiver would rather forget, the child appears able to ignore the troubled times and recall happier moments.

For example, all four of my grandchildren with Fetal Alcohol Syndrome (FAS), who I parented from birth, are now teenagers. Their “do you remember when…” recollections include special family days at Port Dover, Wild Water Works, and Confederation Park. The play area at McDonald’s also holds fond memories, as does shopping at Walmart for new shoes, and toys at Christmas. Though I remember them being difficult to control during our outings, I’m pleased when their recollections include a portrayal of a happy me.

My two ebook memoirs on parenting grandchildren with FAS

are available at the following links, and many other ebook distributors.

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

https://www.kobo.com

http://www.barnesandnoble.com

 


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Danger of Pregnancy & Alcohol

Couples, please avoid alcohol during conception and pregnancy!

Wake up! to FAS

Wake up to issues associated with Fetal Alcohol Syndrome

Katie is a medical student enrolled in an Anatomy and Physiology class studying for her bachelor’s degree. She recently contacted me with information on avoiding alcohol during pregnancy. Katie explained that one of her goals is to share resources about having safe and healthy pregnancies before childbirth. She wanted to share her resource because it explores the dangers of consuming alcohol while pregnant that cause fetal alcohol syndrome.  I am happy to post Katie’s link on my FASD blog. To read her post in full, click the following link.

http://www.dwiminneapolislawyer.com/resources/drinking-alcohol-and-pregnancy/

If you would like to contact Katie for more information, please use the contact page on my blog, and I will forward your request on to Katie. Thank you, Katie, for reinforcing the dangers of drinking during conception and pregnancy.

 


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FASD Visual Aids

Using Visual Aids

While raising grandchildren with Fetal Alcohol Syndrome, visual aids helped them understand “what comes next.” Visual aids are especially helpful for morning and evening routines, such as getting ready for school, and preparing for bedtime.

What are visual aids?

Visual aids are usually pictures specifically created as reminders: toothbrush and paste, hairbrush, medication, pull-ups, clothing etc.; posted on a chart where the child will see them. Initially, and at frequent intervals, the child will require direction on how to apply each routine. Repeating each routine in easy-to-follow steps, until the child is confident to follow the picture prompts without help, is vital for success.

However, if your child with FASD is like my grandchildren with FASD, they might balk at the idea of having large poster-sized visual aids posted around the house, especially when friends come to visit. If so, flash cards showing routines can be effective and less invasive.

Example of Flash Cards

FASD flashcards

FASD flashcards

My FASD memoir links for

  • Two Decades Of Diapers
  • Fetal Alcohol Syndrome, The Teen Years.

http://www.amazon.com/BarbaraStudham

https://www.kobo.com

http://www.barnesandnoble.com

 


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The Dreaded Wait List

Oh, the frustration!

When governments announce a new service to aid children with developmental disabilities, invariably the news quickly trickles down to caregivers overjoyed that “at last” someone has heard their pleas for support and acted accordingly.

The Dreaded Wait List

Trouble is, caregivers are often oblivious to the fact that the new service is bound to be underfunded, and therefore understaffed, causing long wait lists. Add to that, the fact that the child’s disability has to fit a long list of requirements to be eligible for the service, and that services cannot be “doubled-up” which means, should the child be receiving support from one agency, he cannot receive similar help from another. In addition, should an urgent case for the new resource surface, names on the non-urgent list are pushed down a space, making wait times even longer.

Oh, the frustration!

During my twenty years raising grandchildren with FAS, I learned not to hold my breath while waiting for services, especially where the Children’s Aid Society was concerned. Despite their frequent promises of support should I ever need it—which I often did—I was invariably brushed aside due to lack of funding, or told my requirements were outside of their service. Now, as my grandchildren approach adulthood, the DSO (Developmental Services Ontario) referrals for adult services come with guaranteed wait lists. Here we go, again!

FASD Pumpkin

The FASD Pumpkin: Remember some Trick or Treaters have mental challenges.

Be Patient!

Exercising patience while waiting for services is difficult, however, we can demonstrate patience toward all trick-or-treaters this Halloween by remembering there are children in our neighborhoods with developmental, physical, and mental disabilities, and act appropriately when they approach our doors. Despite my protests that my grandchildren are too old to knock on doors for candy, given their mental immaturity, they never outgrow Halloween, so I insist they at least dress the part, thereby giving householders a reason to hand over that much coveted chocolate bar. So, please, if you are approached by teens who you believe are well over the age of trick-or-treating, remember there could be an underlying health reason for their wanting to join in the neighborhood fun.

My author link: http://www.barbarastudham.com


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Pregnancy kits and FASD

Getting the FASD word out!

FASD 2016

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

One problem with FASD is, people are unaware it can be prevented, so here is a thought: One way to let mothers know how to keep their baby FASD free, is to print the words – AVOID ALCOHOL WHEN PREGNANT—not only on the packaging of pregnancy test kits, but on the testing unit itself. Though no method is foolproof, especially when the mother has drunk alcohol before realizing she is pregnant, this one could help. Having that advice printed clearly and in bold letters on the testing unit, could convince a woman who has just discovered she is pregnant, to abstain from alcohol during her pregnancy. What do you think?

A front line perspective on FASD

If you would like a front line perspective on FASD, read my two ebook memoirs, Two Decades of Diapers, and, Fetal Alcohol Syndrome: The Teen Years, both of which address my twenty years raising four grandchildren with Fetal Alcohol Syndrome. and available from your Amazon, these links, and many other ebook distributors. Both are only .99 cents (usd).

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

https://www.store.kobobooks.com

http://www.barnesandnoble.com

 


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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