Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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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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What Is Specialized School Programming: High School?

Today, I had an appointment, along with other parents, to tour a specialized classroom that my two eldest mentally disabled grandchildren might be attending when they begin high school. I have to say up front that I was pleasantly surprised by the enthusiastic way in which we were welcomed by the staff of the program, plus, their efficiency in answering our questions about specialized programming, and also their interest in transitioning disabled children from high school into inter-dependent adult living including the workforce.

At the time of writing this, a decision has yet to be reached as to whether this will be the high school my grandchildren will be attending, so I have to withhold my excitement for now, but for readers who are curious about specialized programming in high school, the following notes I quickly scribbled, while trying to keep up with the discussion, might be of interest.

At this school:

  • There are three classes in the specialized programming: Comprehensive, Autism, and Developmentally Delayed. The tour I attended was for the Comprehensive Program.
  • In the Comprehensive Program, the graduation age is twenty-one.
  • In all three classes combined there is a total of ten Educational Assistants.
  • The Comprehensive Program is geared to students with a minimum grade one or two reading level, plus simple math. Below that, the student would be placed in the Developmentally Delayed program.
  • The students work from the same timetable daily which is important as mentally disabled children prefer structure with as less change as possible, although activities do vary minimally, such as: during cooking class the students will learn to make different meals each time.
  • The students learn life-skills. For example: cooking, shopping, socializing, hygiene, fitness, transportation (taking a bus from A to B without losing their way).
  • Many people (which, before this tour, included me) don’t realize that mentally disabled children can be musically proficient, so I was pleased to learn that specialized programming encourages the student’s skills and confidence through performances in front of other students and parents.
  • Communication between parents and teachers is important to the staff and so daily agendas containing pertinent comments regarding the child’s day are used, plus telephone communication on a regular basis is encouraged.
  • Although registered in specialized programming, students could be assigned an IEP to ensure their individualized needs are continually being met (See post: What is an IEP?).
  • The students are constantly supervised during the school day and travel with a member of staff whenever they leave the classroom (e.g. going to the school cafeteria for lunch, and helping the student to make change while paying for lunch).
  • The staff encourages one-to-one friendships between the students. This particular school has a Best Buddies program to help utilize that goal. There are also after-school activities designed to generate friendships between students such as school dances.
  • When a student helps with necessary work such as clean-up, they receive a freebie snack.
  • The students are encouraged to participate in co-op placements with businesses in their area, resulting in many students finding positions in the workforce upon graduation.
  • I asked if bullying of the challenged children by the mainstream school children was more frequent than bullying of non-disabled students, and was met with a chorus of denials by the staff who assured me they are constantly aware of possible bullying and keep on top of any potential victimizing situations.

If you live in the Hamilton-Wentworth district of Ontario, please go to http://www.hwdsb.on.ca for further information about specialized school programming.

UPDATE: 

I’m extremely pleased to report that my two eldest grandchildren with mental disabilities have been accepted into a Comprehensive Class: Living & Learning Program at a Secondary School for September 2013.

I took my two grandchildren on a recent tour of their new classroom, so they could meet the Teacher and Educational Assistant, and also their fellow students. The classroom will be their home until they are twenty-years of age, during which time they will learn much needed life skills for independence and will get support and help for securing workplace experience and hopefully future employment.

After we had been introduced to everyone in the class, my grandkids were taken on a tour of the school by several of their classmates, during which time the teacher explained to me the various program elements offered in her class, which include:

Functional Literacy:
A reading program which includes a combination of independent reading, guided reading, and shared reading. Materials include – novel studies, magazines, maps, library books, pamphlets, calendars, etc. Writing program includes reading responses, journal writing, resumes, filling out forms, etc. Speaking opportunities include oral presentations, sharing work, role-playing, etc.

Functional Numeracy:
Foundational skills are practiced through hands-on math manipulative, role-playing, environmental numeracy (looking at bowling scores, grocery receipts, menu items, etc.) worksheets and computer drills. Topics include: money, telling time, number sense (adding, subtracting, multiplying, dividing), estimating, weather charts and temperature graphs, shopping, time management, etc.

Vocational Skills:
All students learn job readiness skills such as: resumes, interviewing, positive attitude, problem solving, etc. Senior students participate in Transitional Work Experience Program (TWEP) where the EA takes 1-3 students to a job placement. Students in the past have worked at: Fortinos, Little Caesar’s Pizza, Dollarama, Blockbuster Video, local public schools, and Value Village.

Physical Skills:
Students learn about healthy living and improve motor skills through swimming, bowling, outdoor recreation, physical education, games and leisure activities.

Daily Living Skills:
All students participate in daily classroom jobs such as: preparing food, washing and drying dishes, setting-up the agenda, putting chairs up and down, etc. Class activities include how to ride buses safely in the community, preparing healthy meals, washing clothes, healthy relationships, etc.

Pathways Plan:
Students learn about transitions by using a daily agenda and monthly calendar.

Instructional Practices include:

  • Individualized planning based on student needs
  • Combination of independent and group work
  • Use of hands-on materials
  • Experiential learning through “doing” – Field Trips

This class is an excellent environment in which, over the next several years, I am sure, my grandchildren will thrive and learn skills designed to provide them with a solid foundation for life as adults with disabilities.

Some times, amazing things do happen!


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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


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Kids Mental Health

With all the help from the Internet these days, you’d think it would be relatively easy to find pertinent information on the subject you are searching for. However that depends on two things: the phrasing of your search, and the reliability of the search engine to supply you with a list of web sites appropriate to that phrasing. One of my problems when browsing is trying to think of alternative phrasing when the first one didn’t bring up the results I had anticipated, yet you would think if I’m trying to find information on kid’s mental health, it wouldn’t take too much of a push to realize that typing the phrase – kid’s mental health – would lead me in the right direction! Hmm, why didn’t I think of that before? Too simple, I guess (the phrasing that is!).

But this realization didn’t dawn on me until I was in the corridor of a residential care unit waiting for a social worker to meet up with me and spied, pinned to the bulletin board, a flyer offering help to parents and caregivers of children with mental health problems. Their posted website is http://www.kidsmentalhealth.ca. When I spotted it, I could help but let out a quiet groan of exasperation over the absurdity of my not thinking of searching such an obvious phrase – but it happens.

If you are looking for information for your mentally disabled child in Ontario, kidsmentalhealth.ca is well worth a visit with information for parents and families, professionals, and children and youth. The reason I like this website is because it answers a lot of questions parents might have regarding the mental health of their children. As I’ve said before, in various posts, this is something vital for parents as when we suspect our child might be suffering from a mental disability it’s difficult to know where to start. The website offers direction through listing signs and disorders of mental disabilities, FAQ’s parents might have and answers to them, where to get help and what to expect from mental health services, plus much more. It’s the kind of website worthy of a sigh of relief at having found pertinent basic facts and appropriate help available regarding mental health issues. A definite thumbs-up in my book!

Another website definitely worth a mention is ementalhealth.ca/hamilton. Click Find Mental Health Help, then choose from the generous selection of mental health conditions and topics in the A-Z list. I selected Developmental, Intellectual Delay and Disabilities and many services, help and support for the Ontario region popped up. This website is just the kind of thing we caregivers raising disabled children benefit from.


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What is Black and White Thinking and Narcissistic Personality Disorder?

A short while ago, it was mentioned to me, by a professional who has years of experience working with mentally disabled children, that one of my granddaughters thinks in Black and White.

When I first heard the term, I didn’t realize that Black and White Thinking was an actual disorder but, according to various Internet websites, Black and White Thinking (sometimes called Splitting) is when a person sees things only in extremes –  if something isn’t perfect then it must be terrible, if it doesn’t feel brilliant then it must be stupid, if someone isn’t fascinating then they are boring. There are no grey areas.

I also discovered that Narcissistic Personality Disorder often goes hand in hand with Black and White Thinking and might exhibit through the following traits:

  • Believing you are superior to others
  • Craving power, success, and beauty
  • Being overly jealous, and convinced others are jealous of you
  • Coming across as single-minded, or unemotional
  • Expecting to be perfect in everything and setting unrealistic goals
  • Having fragile self-esteem and being easily hurt
  • Trouble forming or keeping relationships
  • Disregarding those you believe are inferior to you
  • Confused when others don’t always agree with your ideas or plans
  • Disregarding or failing to recognise others’ emotions
  • Craving constant admiration
  • Taking advantage of others
  • Exaggerating or lying about your achievements
  • Finding it almost impossible to be wrong
  • Believing you are special above others
  • Becoming angry when you don’t receive the attention you feel you deserve

Narcissistic personality disorder often exhibits the same features as someone who simply has a strong personality but is defined by the person’s need to be constantly on a pedestal far above anyone else or their feelings, whereas strong personalities are devoid of that character trait.


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What is Therapeutic Daycare?

When my grandchildren were small, due to their mental disabilities, my doctor recommended a Therapeutic Referral for Daycare. At first, I thought the word therapeutic related to their disabilities, as in – if they attend daycare everyday they will benefit from the repetitive schedule and interaction with peers. What I didn’t realize was that the word therapeutic referred to respite for me, in case I became overwhelmed while raising disabled kids and lashed out at them! I learned that mentally disabled children are deemed at-risk, which didn’t do much for my confidence as a parent! And for the longest while, when anyone in the medical field asked me what services the children were receiving, I would explain they were in therapeutic daycare, and wondered why it was always met with a blank expression!

I found a rather good webpage focused upon daycare in the Hamilton, Ontario district. This includes details on therapeutic daycare. It can be found at http://www.hamiltonhealthsciences.ca. In order for your child to attend therapeutic daycare, a referral has to be made by your family doctor, or public health nurse, or a social worker or pediatrician, or other social services or health agencies.

If you live in the Hamilton, Ontario area, and need to apply for a child care subsidy or to see if your child qualifies for therapeutic daycare call 905-546-4872, but be warned, the most difficult part of the undertaking, is not applying or qualifying for therapeutic daycare, but actually finding an opening for your child in a local daycare centre. I recall having to call at least seven day-cares before finding one that said they MIGHT have an opening within six months, after which the referral and subsidy grant lapses and you will have to begin the process all over again! The task can be frustrating and exhausting while trying to keep on top of the situation, which is strange when you remember that therapeutic daycare is intended to give the parent respite!