Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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FASD: Getting the Word out!

Speak Up!

 

FASD 2016

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

FASD: Getting the Word out! In 2016, let’s get the word out on Fetal Alcohol Syndrome. Let’s give those with this mental illness a voice. So often, individuals with FASD don’t speak out because they either don’t know how to, or don’t know who to ask for support. It is up to us caregivers, support workers, and people who care, to be their voice.

FASD: Getting the Word out! Speaking up for those who struggle with mental illness is not difficult, especially if you like to voice your opinion through social networks. Discuss Fetal Alcohol Syndrome with your followers. Do they know what it is? Do you know what it is? If not, read the following, then forward this post to your contacts through emails and social networking sites.

Speak Up!

What is Fetal Alcohol Syndrome? According to health information, Fetal Alcohol Syndrome (FAS) is the most severe form of Fetal Alcohol Spectrum Disorder (FASD): a term used to describe the full range of permanent birth defects caused by prenatal exposure to alcohol. Meaning, if a woman drinks during her pregnancy, she runs the risk of her child being born with a mental disorder. Physical signs of FAS include growth deficiency, craniofacial abnormalities, and brain damage that presents as structural, functional, and neurological impairments. Significant traits of FAS affect the memory, the ability to plan or process directions, reasoning, judgment, and assessment.

FASD: Getting the Word out! For twenty years, I raised four grandchildren, each with a diagnosis of Fetal Alcohol Syndrome. Responsible for their relentless behavior disorders, social anxieties, sensory issues, and defiance, FAS disrupted our world. With no cure for the disorder, their futures look bleak because without continuous support, children with FAS are more likely to grow into homeless, law-breaking adults, with substance addictions, and a loss of family ties.

Securing a diagnosis of FASD can be difficult. In some locations, a diagnosis will only be confirmed when symptoms are present and the birth mother admits to drinking alcohol during her pregnancy. Some argue that a woman might drink alcohol unaware she is pregnant or what alcohol can do to the fetus, and are therefore blameless for the child’s Fetal Alcohol Syndrome. But if a woman is planning a pregnancy, is sexually active without using birth control, or is relying on an unpredictable form of birth control, it makes sense for her to avoid alcohol at all times.

FASD: Getting the Word out! Given the high rate of Fetal Alcohol Syndrome in children, one has to question if enough information is available to women on the risks involved when drinking alcohol during pregnancy. To encourage responsibility, the woman’s partner, family, and friends also need such information. Their encouraging the mother not to drink alcohol while sexually active, or pregnant, will lower the risk of the child being born with FAS.

Testing for Fetal Alcohol Syndrome can be arduous and expensive but is the only sure way to discover if an individual has the disorder. Without the diagnosis, supports and services are often inaccessible; services essential to managing the monumental challenges of FAS.

Teens with FAS are more likely to self-medicate with alcohol and illegal drugs and, due to behavioral concerns associated with the disorder, invariably have trouble with authority, often leading to incarceration and isolation. As the brain with FAS is permanently impaired, it is a life-long mental illness.

FAS is the most easily  prevented mental illness through

the abstinence

of alcohol during pregnancy.

Speak Up!

Thank you for sharing this post with your friends and followers. My book, Fetal Alcohol Syndrome: The Teen Years (available soon) offers a glimpse into various challenging episodes my four grandchildren with FAS and I experienced during the past twenty years. While distressing to read, such crises can occur often in the life of an individual with FAS. If you are considering adopting a child with FAS, or are a mental health worker, a teen with FAS, or want to broaden your understanding of this very preventable mental illness, my first memoir: Two Decades Of Diapers which describes my journey to becoming a grandmother raising four young grandchildren with FAS, and my new memoir Fetal Alcohol Syndrome: The Teen Years, are essential reading.

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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Available Now!

 My memoir: Two Decades Of Diapers is now available. My book describes the events leading to my becoming a grandma raising four grandchildren with Fetal Alcohol Syndrome, and the challenges and struggles we faced as a family.

To read a sample, and reviews, and order my book in printed or ebook format, please visit http://www.twodecadesofdiapers.com

Two Decades of Diapers is also available in ebook format from Amazon and Smashwords at the following links:

http://www.amazon.com/Barbara-Studham/e/B00S3ZJ5R8/ref=sr_ntt_srch_lnk_1?qid=1421779163&sr=8-1

https://www.smashwords.com/profile/view/BabsAnne


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FASD and Duct Tape!

Hope the title didn’t mislead you! But when a child has FASD it seems EVERYTHING has to be secured to avoid injury.

I remember duct tape being my best friend. One day, many years ago when my grandchildren with FASD were youngsters, on hearing–Mom, come and see!–I went from the kitchen into the living room to see all four tucked neatly into the shelving of the TV unit. They had climbed the shelves and curled up one atop another with the youngest being at the bottom with the door closed.

They were giggling and squirming making the unit shake and creak and look as if any minute it would collapse! After freaking, I purchased cheap plastic panels; those awful opaque yellow ones that were so popular back then, cut them to size and duct taped them over the shelving with enough tape that the panels could not be removed. Goodness, it looked awful–but safe!


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FASD Teens and Directions

As with youngsters with FASD, teens with FASD also struggle with following multiple directions, often saying, and looking as if, they understand when in fact they don’t. Although repeating directions can be tiring, success depends on only one or two directions being given at a time.

My experience with raising teen grandchildren with FASD has been that if the requirement needs multiple directions, for example: tidying their room, they were more likely to succeed if they knew where everything “goes”- those books go together on the shelf; your jeans belong in this drawer (label); the fitted sheet which goes over the mattress is sewn at the ends (show them); etc.

As they struggled to understand, tidying their rooms with them several times at first and repeating where everything belonged helped. The next time I showed them how to make the bed plus ask them to put a few things away. This allowed for the multiple directions to be understood at a slower pace until it was “locked in” and they understood the requirements. I realize it’s all so time consuming, but in the long term single directions will save time and energy and produce successful results both for child and caregiver.

Of course, nothing is ever perfect, but that’s okay because I don’t expect perfection from anyone. And even now I will offer to help my grandchildren tidy their rooms as they have accumulated lots of “stuff” and get confused as to where it all belongs, but that’s okay too, as it’s time spent together and that’s never a bad thing!


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FASD Teens and Change in Routine

Teens with FASD struggle, just a much as youngsters with FASD, with change in daily routines, tasks, and unexpected schedules like: medical appointments, outings, bus trips, trips to the hairstylist or clothing stores; anything or anywhere which is not part of their everyday habits. One way to combat their stress and potential behaviour issues during such changes is to explain in advance what their week will look like and what will be involved via a chart posted to the fridge.

My teen grandchildren with mental disabilities always ask how long the appointment or errand will last but, as they have difficulty understanding time, I try to describe time in events, not hours, such as: “We will be back by lunch/supper/bed time.” For some reason, when they have the return time locked in, they are much more comfortable with the idea of going somewhere, or doing something unexpected which tells me just how much they see their home as a foundation of security and the outside world as an intimidating place. The assurance of the return to their home seems to be the deciding factor to their agreeing to the change in routine, and lessens the anxiety they might otherwise experience during an outside event.


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FASD Printouts

As my mentally disabled grandchildren have FASD, for the past few months, I have been attending a Caregivers FASD Support Group in Hamilton, ON. The group is held once a month and offers both daytime and evening sessions, during which we participants discuss the problems we face while raising children with FASD, and learn strategies on how to diminish those problems.

During a recent session we received a hand-out titled: All About Me! It truly is so worth the time and effort going to the website where this printable can be found, and printing out a copy for your child. It’s a way for people who matter to learn more about the child and his/her struggles, such as: teachers, educational assistants, camp counselors, supervisors and volunteer drivers during school field trips, respite workers, family and friends, and neighbours, etc.

In the printout you will find areas to complete with descriptions of your child’s abilities and strengths: Getting to know Me; Medical History; My Emotional Responses; What Works; The Best Environment; and information about FASD for people who are working with the child. 

On the website: http://www.fasdwaterlooregion.ca there are other printouts your child and adults involved in his/her life will benefit from: An Emotions Vocabulary Chart; Identity Information Cards; An Informational Booklet for Siblings of an FASD Child; Picture Cards/Visual Schedules, and other valuable information for caregivers of children with FASD.

This website is a definite MUST to visit if you have any interest in FASD. Or if you would like information on the Caregivers FASD Support Group in Hamilton, ON, please call Melanie White at 905-527-3828 ext. 273.

 


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Respite Caregiver

  • Judy Kokoski: Respite Caregiver

Judy Kokoski, Respite Caregiver

It’s a known fact that caregivers of a child with mental or physical disabilities need respite from their care- giving duties more so than parents of non-disabled children. And while respite often takes the form of relaxation, it can also be a time for the care-giver to catch up on household duties, errands, appointments or just to spend some quality time with friends, or other family members without the presence of the child who is disabled. It also allows for the child who is disabled to enjoy the company of their “special friend” and to experience new activities within their community.

Since 2005, Judy Kokoski has been employed as a respite caregiver in the city of Hamilton, Ontario, Canada. Having worked with many families, including mine, I asked her if she would share her experiences for those who are considering applying for a respite caregiver for their own family member who is disabled, but are unsure of what a respite caregiver can offer.

Here are Judy’s thoughts on the subject:

My original experience was as a Registered Nursing Assistant in retirement homes, so before becoming a respite caregiver I had much experience working with people who needed long term care. Following that experience I worked in various retail stores but found the work boring and underpaid. Then a friend suggested I work as a respite caregiver with Hamilton Community Living. After thinking it over I decided to go ahead and applied for a position with the organization.

My first client was a young man with M.S., after whom my client list soon grew to include many other children and youth with various disabilities – labelled as challenged but all so very different in personality. One of the most challenging aspects for me has been making the initial connection – to bond with the child. Some children bond quickly with their respite caregivers, others not so quickly, and in some unfortunate cases, not at all. Those are the ones that make me feel most like a failure, as if I have done something wrong, or have upset the child, but one has to learn not to take it personally because if a child has a strong personality, their will often stands in the way of them creating bonds with people in general.

The most enjoyable aspects of my job are:

  • Realizing how easily pleased children can be with the simple joys of life such as, taking a walk on a sunny day, spending time at the pier or local waterfalls, picking wildflowers, visiting local museums, airplane watching at the airport, swimming, etc. Plans don’t always have to be expensive outings in order for the children to have fun.
  • Hearing the kids’ suggestions. Telling me what they would like to do instead of me always telling them. Despite their disabilities, or perhaps because of them, their suggestions often amaze me.
  • Never knowing what to expect from the children. The obvious never seems to happen!

Plus, the children often get me to try new things. I remember back in 1983 when I hurt my back I stopped ice skating because I was scared of falling and aggravating the pain but, just a short while ago, one of my young clients suggested we go ice skating together and I thought – why not!? And now I’m back on the ice again! My taking children out often removes the burden from off the parent’s shoulders to take the child to places they couldn’t normally afford to take the whole family to, or, because of other children’s needs within the home, they don’t always have the time.

One of the proudest times for me was when one of my young clients with disabilities received an award from the Exceptional Children “Yes I Can” program. He had shown independence by boarding a bus by himself in the city and arriving safely at his destination. His parents invited me to the “Yes I Can” award banquet and I felt that I had played a large part in his being able to demonstrate independence in that manner. I felt really honoured to be there among his family and watch him receive his award!

In comparison, I remember the many difficult times a particular youth, I have been working with since 2006, would get out of my car while we were travelling. Several times I had to quickly stop, put the car in park, jump out and chase after him, leaving my car and all my valuables behind. But I always had my cell phone in my pocket so I could call his parents and ask for their help especially when he would refuse to get back into my vehicle. One of the trickiest things about the job is not knowing what to expect, or when!

Another time, this same young man, who had refused for several weeks to talk to me, suddenly blurted out – Fries! McDonalds! I took this as him meaning he wanted to eat there and we did so, but on our return to his home I mentioned the incident to his parents and they were aghast as he had never wanted to eat there before, preferring instead a dish of hot Mr. Noodles! The other things he demands are – Drive! Planes! And playing with my dog – all simple joys!

There are also big perks to being a respite worker. This summer I’m off to Jamaica for three whole weeks! All expenses paid by the parents except my plane fair. I’ll be taking care of their son while they relax by the sea and enjoy their summer vacation. Believe me, I can’t wait!

Despite all this, would I recommend this job to everyone? – Absolutely NOT! It takes patience, a strong will, leadership qualities, and the ability to accept change as even the greatest plans can be cancelled on the spot and others, not so exciting, can be put in place. One must know how to control challenging behaviour in a child, to respect the child’s disabilities, and to get along with the parents. All qualities I know I have which makes me wish I had found this work sooner. Also there is no retirement age. I can work for as long as I feel able.

In conclusion, I would like to say I have the greatest respect and admiration for any family living with a special needs person.

Thank you.

Judy Kokoski

… Please note: If you live in the Hamilton-Wentworth, Ontario region and would like information on how to access respite, or would like to work as a respite caregiver, please go to: