Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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Compile an FASD Information File

Make life easier!

While raising grandchildren with Fetal Alcohol Syndrome, I found compiling personal files for each grandchild helped when I reached out to service providers. In each file, I recorded my grandchildren’s medical appointments, diagnosis and results, attached school records such as reports and IEP’s, all school suspensions letters, their interactions with police, and sports/activity dates, etc. I also listed their strengths, what triggered their meltdowns, their behavior, and typical supports required. Files such as these take time to compile but offered me credibility in the eyes of professionals.

To read of the challenges and struggles I survived as a grandparent raising grandchildren with FAS, see my two ebook memoirs: Two Decades of Diapers, and, Fetal Alcohol Syndrome: The Teen Years, at your Amazon store, or follow the links below.

Two Decades Of Diapers

Two Decades Of Diapers

Two Decades of Diapers. Genre/Memoir,

Ebook, Price .99 cents (usd), Ages 18+

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 disorders. If so, then for these, and many other reasons, Two Decades of Diapers is essential reading. During my twenty years of raising four grandchildren with Fetal Alcohol Syndrome, the temptation to run from this often uncontrollable mental disorder and all the struggles it brought into our 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 disorders. 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.

FAS: The Teen Years

Fetal Alcohol Syndrome: The Teen Years

Fetal Alcohol Syndrome: The Teen Years. Genre/Memoir

Ebook, Price .99 cents (usd), Ages 18+

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 disorder caused by pre-natal exposure to alcohol. 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. Nevertheless, 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 the mental disorder 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.

Both Two Decades of Diapers, and, Fetal Alcohol Syndrome: The Teen Years are available from your Amazon store, or the following links:

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

https://www.kobo.com

http://www.barnesandnoble.com


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Parents Beware!

I never thought it would happen to me!

Despite the few months I babysat a six-month old child being raised by his grandparents, as a young mother, the thought of one day having to raise my own grandchildren, never entered my mind,  In Canada, a growing number of grandparents are now parenting and raising their grandchildren. So much so, that it is time government officials raised their heads out of the sand regarding the ability of grandparents to do so. Not all grandparents have the energy to raise their grandchildren and, if the child has a mental or physical infirmity, it can be nigh on impossible. Though it appears in the best interest of the child to be placed with family, growing up with grandparents is not necessarily the optimum option.

Let grandparents be grandparents!

Too often, children’s agencies take advantage of grandparents when at their most emotionally vulnerable—i.e. when they learn their grandchild is in need of a home. There is a growing need for available foster homes where the child can be nurtured by young caregivers who have energy and use contemporary parenting strategies. Despite the propaganda, not every child placed in foster care is subject to abuse. My personal experience with foster parents has been very positive. There are many compassionate foster parents in Canada willing to give children the care they need and deserve.

Parents Beware!

Two Decades Of Diapers

Two Decades Of Diapers

FAS: The Teen Years

Fetal Alcohol Syndrome: The Teen Years

So, parents of today, for various reasons, you might one day be faced with the decision to raise a grandchild. Life has a way of presenting us with disquieting choices that can change our lives forever. And if you believe it could never happen to you, read my two memoirs, Two Decades Of Diapers, and, Fetal Alcohol Syndrome: The Teen Years, which describe my twenty years raising four grandchildren with Fetal Alcohol Syndrome. Both are available in ebook format from your Amazon store, the following links, and many other ebook distributors.

 

 


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Hallowe’en and FASD

Kids with FASD enjoy Hallowe’en, too!

FASD Pumpkin

The FASD Pumpkin: Remember some Trick or Treaters have mental difficulties

 

Hallowe’en and FASD

When you are handing out candies this Hallowe’en, please remember some trick or treaters might have FASD and be over-the-top exuberant. So to avoid turning ghosties or vampires into real-life monsters, please check out these tips.

  1. Many children with FASD have poor vision, so keep your porch and driveway well lit to avoid tumbles on your property.
  2. Avoid growing angry if a trick or treater pushes through the crowd for candy. Children with FASD don’t always understand rules of etiquette but are afraid of being left out.
  3. Over-exuberance can cause loud noises. But they are simply whoops of enjoyment from kids rarely involved in neighborhood events.
  4. Many children with FASD function lower than their chronological age, so if some “big kids” knock on your door, don’t panic. After all, it’s only one candy.
  5. Don’t put down kids costumes. Many caregivers of children with FASD encourage them to make their own costumes. So if a vampire has green blood, or Spiderman got confused with Superman, brush it aside.
  6. Hallowe’en is a fun night for kids with FASD as they don’t need an invitation. Unlike birthday parties, it’s for everyone, so don’t get mad if they don’t say please or thank you for the candy, or run across your lawn. When overly excited to be part of the crowd, they tend to forget their manners.

Hallowe’en and FASD: Remember, FASD is no laughing matter!

My Websites:

http://www.challengedhope.com

http://www.twodecadesofdiapers.com

All my books are available at:

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 Marathon

Get Your Running Shoes On

Running An FASD Marathon!

 

 

 

 

 

 

 

I once heard it said that raising children with Fetal Alcohol Spectrum Disorder is like running an FASD marathon. At the time, I wasn’t quite sure what the individual meant but, as my grandchildren with Fetal Alcohol Syndrome progress through their teenage years, I now know exactly what it means:

  • RUN one step ahead of them. Know their moods. Recognize the onset of a meltdown.
  • EXPECT setbacks, but FORGE AHEAD.
  • Know this takes STAMINA and FOCUS and diminishes ENERGY.
  • PLAN A STRATEGY to prevent losing to their defiance.
  • Stay ON TRACK.
  • STAY HEALTHY so you can cope with the behaviors waiting to TRIP YOU UP.
  • Don’t FALL, never FAIL, NEVER GIVE UP.
  • KEEP YOUR EYE ON THE FINISH LINE; only when night falls can you say you WON.

You see, it is a marathon. So get on those sneakers and start running! I’m sure many caregivers of teens with FASD can come up with more tips on winning the FASD marathon. So, let’s hear them. Please leave a comment.

Please check out my memoir: Two Decades of Diapers, and my other books at:

 


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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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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.


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Special Needs Educator

… My school years are long in the past, but I do remember how mentally disabled students were treated back then. I’m thinking of two students in particular who were my peers in the elementary school in England where I grew up. There was Jennifer who suffered with the worst stutter I have ever heard plus severe learning disabilities, and Robert who was obviously challenged by an acute case of ADHD. Strangely enough, in those days, bullying of the more vulnerable by fellow students was seldom practiced, sad to say the teachers more than made up for it.

Not a day passed without my seeing a teacher lob a blackboard eraser at Jennifer or whack the back of her hand with a wooden ruler as she painfully stuttered her way through a story she couldn’t read, her face turning red with embarrassment and tears streaming down her cheeks as she was heckled and humiliated by the very person who should have been helping her. And I remember the time the Principal called the whole school staff and students out into the grounds, then dragged Robert outside and publicly shamed him by pulling down his pants and repeatedly swiping him on the rear end with a sneaker, for insolence over not listening to authority. Robert’s protesting howls are with me to this day.

For me, trying to justify this sordid behaviour against the mentally disabled with the excuse that teachers just didn’t know enough about mental disorders in those days is unacceptable. When did ignorance replace compassion?

Thank goodness things have changed! That’s one reason why I contacted my two eldest mentally disabled grandchildren’s teacher and asked him to help parents realize just how much help there is for mentally disabled children in the classrooms today.

His name is Tim Groenewegen and he is a special needs educator in the city of Hamilton, Ontario and kindly agreed to share his experience with, and knowledge of, special needs education….

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             Teaching Students with FASD: Tim Groenewegen

As a special needs educator within the Hamilton-Wentworth District School Board (HWDSB), I have been privileged to work with many students diagnosed with Fetal Alcohol Syndrome Disorder (FASD). In this article I hope to inform parents and guardians of children with FASD of the education systems support for students with such needs, the educational choices that will have to be made, and how to unite parents/guardians and educators in supporting children. I will include in the term FASD: Fetal Alcohol Effects (FAE), Partial FAS (PFAS), Alcohol-Related Neuro-developmental Disorder (ARND), and Alcohol-Related Birth Defects (ARBD).

Background

I have been working with students with special needs for the past four years with the previous two years having been in a special class setting. I made the switch into the special education classroom after working as a respite care worker for students with mental and physical disabilities. I had several realizations while working as a respite care giver: I have a skill set useful for special needs education, I enjoy teaching the life skills component of a special needs education classroom, I am able to perform the administrative duties associated with high needs and I very much enjoy seeing students reach their social, emotional, educational and physical goals. After this realization, I pursued my Special Needs Education specialist certificate through on-line course work.

Teaching students with FASD has been both challenging and rewarding. Understanding the needs of a child with FASD is a complex matter as their needs are different to the other children in my class. In addition, the needs can vary greatly between students with FASD. It is a learning process to understand how to better structure their day, lesson or social expectations and the HWDSB has provided me with training from a FASD specialist. By communicating with parents, caregivers, social workers and the academia, I have been better able help my 4 students with FASD perform better in the special education classroom.

Through experience I have found the following premises essential to apply to the education of students with FASD:

  • – Foundational to the success of students with FASD is the premise that they are trained for a successfully dependent future not a successful future of independence. In doing so, we teach students how to access the resources available to them. 
  • – Repetition can replace thinking so we repeat important actions until they become automatic. 
  • – Constant supervision and structured choices will help students to choose the right actions. Extra supervision is given to children with FASD during unstructured times such as recess time, before and after school. 
  • – Setting educational goals just below the child’s potential, which seems contrary to success, but will enable students to approach material feeling confident in themselves and their surroundings. 
  • – Offering what may appear to be rewards before more difficult academic content helps students feel successful before venturing into something new. These nuanced approaches have lead to much success in the classroom.

Placement

The twelve students I educate were placed in my classroom through a formal process following the decision of the Identification, Placement and Review Committee (IPRC). This committee determines if a student should be identified as an exceptional student (according to ministry and board criteria) what exceptionality/exceptionalities they have and what classroom placement would best suit their needs. This committee may consist of a principal, vice principal, special education consultant, learning resource teacher and a classroom teacher. Parent/guardian input into this committee is important in order to benefit the student.

Deciding on which classroom setting is best suited for a child with FASD is an important decision. The following options are most often presented:

1. Regular classroom: In this case, a student identified as exceptional will stay in a regular classroom with additional support. These supports will include an Individual Education Plan (IEP), and may include assistance from an Educational Assistant (EA) or from a Learning Resource Teacher (LRT), extra supervision, and a safety intervention plan (SIP). In some cases, a student will spend most of their time in the regular classroom and integrate into another classroom for a particular subject (e.g. attend a grade 3 math class).
2. Special Class: In a special class, a student will be one of a maximum of 12 students. Their teacher will have special training in Special Needs Education and there will be at least one EA in the class. Each student will be on an IEP, more closely supervised during transitions (between classes, before and after school), and have a greater focus on daily living skills during the course of a school week. The academic level of a special class is a large factor to consider as students in a special class are typically placed there due to high educational needs.
3. Special Day School: This placement best suits students with severe behaviour needs, mental health needs and academic concerns. All students are on IEPs, are placed in small class sizes and have access to special education teachers and EAs.
Communication between school and home

Open communication between home and school is vital for the success of students. Teachers may send home a questionnaire at the beginning of the school year or partway through the year if new student arrives. The questionnaire seeks to gain understanding of key topics such as: how a student communicates, what their strengths and needs are, what interests they have and what goals they are trying to achieve. Accessing this information will minimize the “settling in period” into a new school or new class setting. Teachers will use the student agenda, phone or possibly email to communicate success, concerns or incidents. The student agenda is the most used medium of communication between home and school. Many parents and guardians find it helpful when the teacher notes down the nature of a conflict or incident at school so they can discuss it with the child at home. For many students with FASD, the connection between how they feel and what happened can be too great of an intellectual step to make on their own; the agenda can help make that step.

Teachers appreciate being kept up to date on issues pertaining to the well being of their students such as:

  • – changes in medications
  • – change in living arrangements
  • – upcoming events that may be causing excitement or anxiety
  • – new reward systems or behaviour tracking systems
  • – key terms or language used at home targeting behaviour e.g. “keep it small”, “ fishing” (when someone is looking or “fishing” for negative attention), “because that is the rule…”
  • – meetings with other people in the students care team e.g. doctor, psychologist, therapist…
  • – information regarding school the parent/guardian may not be aware of e.g. student broke up with her boyfriend or hurtful words were exchanged between students in the change room

Plan for the future

Goals for students with FASD should be goals of successful dependence on others rather than goals of successful independence. Focusing on functional math skills e.g. paying for groceries, budgeting; and functional literacy skills e.g. using a bus map, reading a recipe are crucial for future success. Goals for the future can and should be chosen with the student/parent/guardian and teaching team. Many generic goals will be set for students such as the ones listed above. Additional goals or refining goals can be done with increased input from guardians and parents. For example, a parent or guardian could provide a more individualized perspective by indicating a child’s phobia of being in crowded places (i.e. bus), anxiety around talking to strangers, personal hygiene skills, toileting, fine motor skills, or pronunciation. Together, goals can be chosen and monitored to help meet these needs on a case by case basis.

Choosing a high school setting that will equip students with dependent living skills, teaching functional math and language, and training in employable skills will help students achieve a successful future. This can be discussed at an IPRC meeting and be written into the “transition” section of the student I.E.P. Working as a team of parents/guardians, educators and medical staff can support students with FASD from kindergarten through to adulthood in achieving a successful future.

I wish you all the best in planning for success. I hope my perspective has helped you in making the right educational choices for the children you care for.

Tim Groenewegen

Helpful http://www.HWDSB.on.ca documents:

  • Working Together pdf.
  • IPRC pdf.
  • IEP pdf