Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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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 


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New Book Now Available

FREE to DOWNLOAD!

My memoir, Two Decades Of Diapers, and its sequel,

Fetal Alcohol Syndrome: The Teen Years,

are now free to download to an e-reader from my website

http://www.twodecadesofdiapers.com

FREE to DOWNLOAD!

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 raising 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 author, Barbara Studham’s, 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 her world, was significant. Despite her grandchildren’s strengths, their Fetal Alcohol Syndrome caused severe behavioral issues, eventually overwhelming her parenting abilities resulting in a breakdown of the family unit she 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 her memoir, Barbara describes the challenges her adopted daughter with FAS endured, her teen pregnancies, how Barbara became a grandmother raising grandchildren with FAS, and the crises, shattered dreams, and strength and love they share.

NEW BOOK NOW AVAILABLE

FREE to DOWNLOAD!

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 is the sequel to author, Barbara Studham’s, first memoir: Two Decades Of Diapers. In each memoir, Barbara gives 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. Barbara Studham spent twenty years raising grandchildren with FAS. Through her wealth of experience with the disorder, she leads us through her desperation, fears, hopes, and prayers while coping with her grandchildren’s teen years. However, Barbara would be the first to admit that while FAS brought a whirlwind of emotions into her life, her grandchildren’s struggles to cope with mental illness far outweighs any trauma she has 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.

 

All of my books are available at http://www.twodecadesofdiapers.com

Amazon, Kobo, Smashwords, Barnes and Noble,

and other fine ebook distributors.


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What is a Thanksgiving turkey?

Have you ever seen a Thanksgiving turkey?

October 12th 2015 is Thanksgiving for Canadians and we have a lot to be thankful for.

Have you ever seen a Thanksgiving turkey?

Over the years I’ve seen lots of Thanksgiving people: friends, family, neighbors, and church members, all who have reason to give thanks for the special day. But I’ve never seen a Thanksgiving Turkey! It’s a misnomer, a contradiction of terms; for what Turkey would give thanks for being beheaded, roasted, and smothered in gravy?

As delicious as the meal sounds, there have been times when I’ve been called a Turkey; not only because of my sagging neck, but a turkey for raising my grandchildren; a turkey for caring too much; a turkey for believing I could help these youngsters with mental illness. Well, yes, if one looks at my situation through physical eyes, those people are probably right. But, come October 12th, while we tuck into our Thanksgiving meal, this is one turkey who will be giving spiritual thanks for the courage to “stick my neck out” and be there for children with FAS.

HAPPY THANKSGIVING!

I’m also thankful for my books, all 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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A Sofa Full Of Memories

A New Sofa, A New Era!

Today, I’m getting a new sofa. My old one is twenty-two years old, sagging, food stained, crumb-filled, and most likely a bit smelly. But, oh my gosh, does that couch hold memories! I purchased it way back in l993—one year before I bought a sweet, little, black and white kitten who eventually died at the old age of twenty; two years before I discovered my teenage daughter was pregnant; three years before I took custody of my eldest grandson; six years before I had custody of my next two grandchildren born eleven months apart, and nine years before I was granted custody of my youngest granddaughter.

A sofa full of memories!

That sofa has seen a lot of activity—it’s been jumped on, screamed on, napped on, had food spilled on, climbed on, been vomited on, drawn on, watched tv from, and been timed-out on. It has had baby’s diapers changed on, Christmas and Birthday gifts opened on, and tears shed on (mostly mine).  It’s been dusted, vacuumed, and washed umpteen times. It’s been moved around rooms and moved to another house. But it’s now so uncomfortable that I had to slide a piece of wood under the cushions so I wouldn’t sink down to the floor when I sit. Even visitors avoid it.

So, it lies, a sorry sight, out in the yard waiting to be picked up by the garbage collectors. How sad it looks, as if it knows it is no longer welcome in our home. And sadly, it isn’t.

A sofa full of memories!

I can’t wait for my new sofa to arrive! It’s like waiting for the New Year’s Eve disco ball to drop in Times Square, because a new couch means a new era in life—hopefully a happy one. And, even though, my grandchildren will destroy it little by little, it too will embrace our memories as I continue to raise my grandchildren, write blog posts and books, and advocate for those with Fetal Alcohol Syndrome. Its only consolation being, by the time it reaches twenty-two years of age, I will most likely not be around to replace it!

Some Of My Books

All 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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FAS: Starting a New School

FAS: Starting a New School

Tips to Remember for FAS: Starting a New School

FAS: Starting a New School

All children react when starting a new school, whether they have Fetal Alcohol Syndrome or not, but kids with FAS can overreact to the situation. The following tips for starting a new school stem from my own experiences with FAS grandchildren.

  • Before school begins, drive by the school while out shopping, etc., using a positive tone to remind the child it will be their new school.
    • Tour the school with your child before the start date.
  • Take your child to meet the teacher. Then ask the child to draw/paint a picture of their new school and teacher. Post it on fridge and admire it in front of the child when family or friends visit.
  • Take photos of the school and interior as a reminder for the child of what to expect and post them on fridge. Apply colorful, funny stickers to the photos.
  • Do a count down a week before on the calendar. Use fun stickers. Encourage your child to cross off the days.
  • If you work, take a photo of yourself smiling at your job then remind the child that is where you will be, and you will be thinking of them the entire day.
  • Acknowledge separation anxiety and its consequences.
  • Explain there will be something special waiting for them on their return: favorite food, dollar-store items.
  • Let the child ask as many questions as needed. Smile whenever you mention school. It’s important to keep the mood upbeat.
  • Prepare the child the night before by preparing the lunch, laying out clothes, and stuffing backpack, avoiding a rushed atmosphere the following morning.
  • If friends will be attending the new school, remind your child of who they are.
  • Reassure the child as much as possible, but don’t give in to pressure.
  • Have an emergency contact at the ready in case the child is dismissed early due to behavior.
  • Expect problems so you won’t be disappointed.

FAS: Starting a New School

The best people to ask for advice around starting a new school, are children with Fetal Alcohol Syndrome, and one of those children is my youngest granddaughter with FAS who is now a teen.  Following, are her strategies for teachers educating students with FAS. She insists all the strategies worked for her, plus, she thinks my blog is cool and helpful to others, and wants to get involved.

“Thank you, darling, and congratulations on this defining moment as you take your first step toward advocating for children with Fetal Alcohol Syndrome. I love you and look forward to many more of your posts”

My youngest teenage granddaughter with FAS, suggests the following strategies for teachers. She told me, I just typed:

  • It helps if the child knows the teacher well before starting the school. Have more than one meetup with the teacher before the day arrives so the child remembers who the teacher is. (Grandma thinks this a great idea. Perhaps several meet ups over the month of August could be arranged with the teacher)
  • Supply fidget toys for the child, i.e. stress balls, floam, mini stuffies, available from any dollar store by either teacher or parent. Teacher must not get agitated if the child uses the fidget toys a little too noisily during a class.
  • Absolutely NO YELLING on the teacher’s part. It makes things worse and the loud noise upsets the child.
  • The teacher should give advance warning before ending one subject and beginning another.
  • If the child is becoming overwhelmed, distract the child with another activity.
  • If the child finds it difficult to write down instructions, have them take a photo (cell phone) of the instructions instead, i.e. from the chalk/white board and read the instructions from there.
  • To raise the child’s confidence promote them to helper of a chore you know they can do.
  • Supply free time on electronics, board games etc., as a reward for positive attitude.
  • Supply stuffies for recess/sick time.
  • If a fight with another student ensues, ask for an explanation then instruct the child to walk with a friend while listening to music to allow for calm down time.
That is interesting! Each one of the strategies has helped my granddaughter achieve success at school. But I hasten to add she has an amazing teacher, which helps no end when parents are advocating for their children’s education. As this is her first contribution to this website, please leave a comment of support as she steps out of her comfort zone to help others!

 My websites:

http://www.challengedhope.com

http://www.twodecadesofdiapers.com

All 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