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 Day, September 9th

It is FASD Day on September 9th!

FASD Day, September 9th

September 9th each year is FASD Day to promote awareness of the disorder

 

September 9th of each year is FASD Day. Someone recently texted me to ask if I was doing anything special to promote awareness of FASD on this special day. To my shame, I could not generate one idea of how to highlight FASD, the most preventable form of mental illness. For twenty years, I have raised grandchildren with FASD, so I cope with the disorder on a daily basis, but to create an advocating event, for me, proved impossible due to time and financial limitations.

So, today, September 9th 2015,  I am relying on this blog to advocate for me. It’s where I post content about FASD. Although getting people to read it can be a struggle in itself. To give you an idea of that struggle, take note of what happened regarding my previous blog post.

As a blogger advocating for FASD, I naturally joined Facebook groups to find members who do the same. And, when my teenage granddaughter, who has FASD, offered to advocate for students with FASD through strategies for teachers, and allowed her strategies to be posted on this blog, I was ecstatic. Is this how it works?—I thought—one person raises, the next generation advocates? Perhaps my twenty years of overwhelming stress is finally paying off!

FASD Day, September 9th.

Excited over her contribution, I turned to one FASD advocating Facebook group that boasts over seventeen thousand members, to post a request for members to read my granddaughter’s strategies then offer her encouragement to continue advocating. Naturally, I hoped they would also “share” or “like” the post, but a supportive comment would have sufficed.

No, I didn’t expect seventeen thousand people to respond to my blog post, but one would have been nice. But the reaction was a disappointing zip! Last time I checked, there were two comments, not from members of the Facebook group, but from friends who care. Of course, I appreciate their supportive comments, but where are the advocates? Isn’t that what FASD day is all about—promoting and advocating? If not one in seventeen thousand advocates are interested in supporting a newbie advocate like my granddaughter who struggles daily with FASD, why would we expect people who know little to nothing about FASD to show interest in the topic?

This turning of backs by people on the front line needs to end. So, fearing I might become one of them, while it is too late this year, I promise to promote awareness of FASD on FASD Day, September 9th 2016! Please join me!

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


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FASD Feelings

Kids with FASD often believe their feelings or opinions are worthless, therefore it’s important to distinguish and label emotions so the individual can more easily recognize and express their feelings.

http://www.fasd.alberta.ca offers a booklet titled: FASD Strategies and Solutions. There I found a page on Feelings and Emotions which reads: “…. teach emotions in a concrete way (e.g. smiling means happy).”

  • A “check-in” time for internal feelings will help in stating which feelings are physical and concrete.
  • After an outburst, talk about what your child felt during the meltdown; for example, a beating heart, sweaty hands, hot face. Attach the concrete feeling to the meltdown so she can begin to identify what feelings are connected to certain behaviours.
  • In order to be able to act appropriately to any emotion, your child must first have some way to recognize concretely what she is feeling. That feeling must then be named and “rules” for appropriate reaction to that feeling must be made.
  • Create a “feelings” dictionary, using line-drawings of complete stick men rather than just facial expressions for those most common feelings the child is likely to experience. A complete body can show more than just a face and is much easier for the child to associate with what he is feeling. Have one emotion per page.
  • Always name emotions very clearly. With teens and adults, name the emotion first and then follow with the words their friend’s use (“angry” vs. “pissed off”).
  • To encourage emotional expression, use a gingerbread man outline drawing and simple colour codes (e.g. red for anger, blue for sad, yellow for happy, and gray for blank). Have your child colour on the gingerbread man where he has those feelings. This can give you a quick and immediate idea of the state of emotional health (e.g., red in the head and the hands is a good indicator of being ready to “lose it”; gray in the head and on the body is a good indication of being “shut down”). this will help, especially when the child is not able to verbalize her thoughts and feelings.
  • Once the feeling is identified correctly, have a simple plan to help the child. For instance:
  1. “Losing it” – use calm down technique.
  2. Caregiver is “ticked off” – stand still, look at caregiver and listen.
  3. “Tired” – lie down and rest.
  4. “Frustrated” – have a list of physical activities that she can do and have her choose between two.
  5. “Angry” – express it physically in a previously identified acceptable and safe manner.

Do not expect: 

  • Insight
  • Application of yesterday’s learning to today’s experiences
  • That the child will remember a feeling from one time to the next without support.

The child will not necessarily be able to understand the emotions of others just because we were not able to help her understand her own.

 

 


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FASD Teens forming Friendships

Teens with FASD often struggle to form friendships, so it is vital they interact with other teens who face similar challenges. My teen grandchildren are enrolled in a Comprehensive Class at school which affords them the opportunity to find friends among their classroom peers, while experiencing friendships with non-disabled peers via the school’s Best Buddy program.


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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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Depression & Pregnancy

Valuable Resource For Women Suffering With Depression In Pregnancy

Laura Chapman of http://www.psychguides.com writes:

If a woman has a history of depression, she is more likely to suffer with depressed mood during pregnancy. However, even women without previous mental health problems can develop low mood when pregnant. Women may not appreciate that they are suffering from depression which can adversely affect their own health, as well as the well-being of their unborn child. This helpful guide on the subject of coping with depressed mood while expecting highlights the importance or receiving timely diagnosis and treatment. The various treatment options are discussed, providing an overview of the non-drug therapies available for women with milder depression or for whom antidepressants are contraindicated.


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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….

photo (2)

         

             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