Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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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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What is Selective Mutism?

I’m not sure if my youngest mentally disabled grandson has Selective Mutism as he hasn’t been identified as having such, but after comparing his symptoms, especially in early childhood, to facts I have read on websites, I believe there is a strong possibility he does. In fact, thinking about it now, I believe my eldest grandson might have the disorder also, as he would never speak to anyone outside of the home but just stand and stare when being spoken to. Even at his age of sixteen today, he still has difficulty communicating with strangers, never voicing his opinions, and either just nodding or shaking his head when asked questions.

One of the websites I browsed for info on Selective Mutism was http://www.minddisorders.com whose definition of Selective Mutism is… a childhood disorder in which a child does not speak in some social situations although he or she is able to talk normally at other times. 

The article continues with … Selective mutism is characterized by a child’s inability to speak in one or more types of social situations, although the child is developmentally advanced to the point that speech is possible. The child speaks proficiently in at least one setting, most often at home with one or both parents, and sometimes with siblings or extended family members. Some children also speak to certain friends or to adults that are not related to them, but this variant of selective mutism is somewhat less common. The most common place for children to exhibit mute behaviour is in the classroom, so that the disorder is often first noticed by teachers.

Causes and Symptoms…The symptoms of selective mutism are fairly obvious. The child does not talk in one or more social situations in which speech is commonly expected and would facilitate understanding. Some children with selective mutism do not communicate in any way in certain settings, and act generally shy and withdrawn. The disorder is also often associated with crying, clinging to the parent, and other signs of social anxiety. Other children with the disorder, however, may smile, gesture, nod, and even giggle, although they do not talk.

This website offers a lot more information on Selective Mutism as do other sites such as: http://www.anxietynetwork.com and http://www.asha.org.

Fortunately, my grandson, who is currently registered in a residential care program is receiving a lot of help from the staff regarding his reluctance to speak to adults or when adults are around. His current teacher at the school where my grandson attends a specialized program is also using strategies which aid in bringing him “out of his shell” and giving him the confidence he needs to take the next step in openly communicating with adults (see my post: The Quiet Child).

If you believe your child has Selective Mutism disorder, contact your doctor to discuss the situation and for information on how you can get a diagnosis plus help locating services for your child.


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Financial Limitations

One of the most exacting pressures while raising my mentally disabled grandchildren has been the financial limitations placed upon me and my grandchildren through my having no choice but to become a social assistance recipient.

For a younger adult, raising children while working outside of the home is stressful enough, but trying to do both as a grandparent raising grandchildren with mental disabilities would have been physically impossible. Each grandchild came to me at a very early age, just a few weeks, and they were born remarkably close to each other with two being born in the same year, just eleven months apart. And, due to their mental challenges, they did not give up the bottle or become toilet trained as early as most toddlers, which meant I had to buy baby formula, diapers and wet wipes for a longer period of time, often for more than one child at a time.

The struggles I had paying for all their needs over the years has been astronomical often forcing me to ask people to lend me money for groceries – a very humiliating experience. It wasn’t until their disabilities were identified and I could apply for disability income to help me with their extra needs, did I find things a little easier – I repeat little! I have to add that if that income hadn’t been forthcoming we wouldn’t have made it as a family and the children would have to be placed in foster care – that’s how impossible it is to live on social assistance for any length of time, and how ludicrous that if we had been a non-disabled family it would have been financially impossible for us to stay together.

Frustratingly, I only discovered I could apply for disability for the children’s extra needs by accident. Someone, I believe it was a doctor, had informed me of respite hours I could apply for through a local organization who would send workers into my house for a couple of hours a week to give me a break from taking care of the children. After filling out the application, I noticed an area at the end of the form that asked if I received disability benefit for the grandchildren which, of course, got me wondering. So I called their office and was informed of my right to apply for a disability benefit. So if I hadn’t applied for the respite hours I might never have got the financial help we so desperately needed. But the contrast between what a respite worker earns when taking care of my children compared to the paltry sum the government paid me for actually raising the children is mind-blowing – $30 per hour for the worker vs. 0.97 cents per hour for me, with considerable claw backs because the government is afraid any extra income might actually result in my feeling like a purposeful human being.

Food banks can be a help but I remember going to a food bank in my area and seeing cans of baby formula on the shelf and asking the volunteer if I could have two cans instead of the compulsory one, but she became very agitated voicing her ire at me for even contemplating the thought – “What are other families going to do, if you take ALL THE CANS?!” she growled, when I had simply asked for one extra. I felt like Oliver Twist facing the spiteful cook. But that wasn’t the reason I stopped going to the food-bank, the long waits just became too tiresome especially when ultimately faced with almost bare shelves and the decision whether to choose the unwanted, lonely jar of marinated artichoke hearts left sitting on the shelf over the canned jumbo pickerels in spicy sauce! I mean, do people actually eat those things?

I have a question – who do all those toys go to that people donate to local charities at Christmas? I mean, thousands of dollars worth. When I registered for a Christmas hamper and toys at my local food bank one year, after waiting hours for my number to be called I dutifully followed the assistant who placed food items in my shopping cart, then directed me to the toy section to select a toy for each of my grandchildren, where I was amazed by the junk they were giving out. You know, those pretend Barbies from the dollar store whose legs are made of pliable vinyl and fall off after five minutes of play, or wannabe Matchbox cars that are made of plastic with wheels that stay behind when you push the vehicle along. I couldn’t believe I was expected to be grateful for such rubbish, especially when I saw newscasts on my local TV station boasting of warehouses full of expensive, fantastic, USABLE, toys that kind-hearted people have donated!

Then there are those complaining taxpayers! Oh boy, what a joyful lot they are –It’s people like you who drain the system!I work hard for my money, why should I pay your income!“It’s your problem, you chose to raise your grandchildren! Goodness, it’s endless! Even the children’s grandfather, my ex-husband, complained when I called to ask if he would consider buying our eldest grandson new shoes. His response – “Can’t welfare pay for them? I pay enough Goddam taxes to support welfare families!” All to whom I say – Imagine the amount of money I have saved taxpayers by taking responsibility for my family instead of turning my back and allowing them to be raised from babies to adults in foster care. Possibly hundreds of thousands of dollars!

“The moral test of government is how it treats those who are in the dawn of life.. the children; those who are in the twilight of life.. the elderly; and those who are in the shadow of life.. the sick, the needy, and the disabled.” 

Hubert H. Humphrey


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A Sample of Financial Aid Available To Caregivers Of Disabled Children living in Ontario

If you are raising a disabled child, depending on your income and your child’s needs, you might qualify for various financial benefits. For example, my grandchildren all suffered incontinence for years, and in fact two still wear pull- ups at night, while one wears pull-ups both day and night for bowel and urine incontinence. This can be very expensive and, given my limited financial income, I was eligible for an Easter Seals Grant for their daytime (not night time) incontinence. An application to Easter Seals must be filled out and returned, then depending on your child’s needs you might qualify for funds to offset the cost of diapers. You will need to keep all incontinent supply sales receipts as Easter Seals will request to see them from time to time to prove your expense. Easter Seals can provide so much more for people with disabilities. To find out what is available go to www.easterseals.ca

You might also qualify for ODSP (Ontario Disability Support Program) to offset costs of raising children whose needs are greater, and therefore more costly, than those of non-disabled children. An application has to be filed with the Ministry of Community and Social Services which determines your eligibility. Some items you can claim for are: extra loads of laundry re incontinence or soiled clothing; extra bed linen; clothing because of wear and tear; educational toys re development; night time pull-ups for incontinence; specialized camps and programs; etc. ODSP can also help adults with living and housing expenses, and offer employment supports. Your allocated worker will determine your needs and qualifications. See servicecanada.gc.ca for more information.

Also available is DTC (Disability Tax Credit) and CDB (Child’s Disability Benefit) for children with severe disabilities. The CDB is a monthly benefit that the recipient receives along with the Child Tax Benefit. To apply for these benefits, a printable form (T2201) is available on the government website and needs to be completed by your doctor. See servicecanada.gc.ca for more information.

To offset parents’ costs, there is a yearly recreation fee assistance available for recreation programs, or camp, plus a free annual swimming pass. See http://www.hamilton.ca.

For respite funding, see:

  1. http://www.ccac-on.ca
  2. http://www.communitylivinghamilton.com
  3. http://www.rygiel.ca
  4. http://www.contacthamilton.com