Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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Available Now!

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

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

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

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

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

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FASD Printouts

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

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

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

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

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

 


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Council For Exceptional Children

  • Council For Exceptional Children, Hamilton-Wentworth Chapter 289, “Yes I Can” 2013 Awards

My youngest grandson who suffers with mental disabilities won an award. And I say that with pride because despite his struggles, and challenges caused by his disabilities, he was able to forge ahead and do something to benefit his community!

I attended the Award Ceremony with my grandson and his sister who, incidentally, looked beautiful wearing her graduation dress. There were hundreds of attendees at the program, all of whom enjoyed a delicious supper, but not before we watched, mostly on large screens around the banquet hall, students who suffer with mild or intense disabilities receive their awards and hear some very positive and encouraging personal remarks from the speaker. The looks on the children’s faces and the whoops of delight emanating from their families as each child‘s name was called, spoke volumes.

It was a very special evening. Not only because of the happiness experienced by the students, or the pride that was bursting from every caregiver in the room, nor the delicious dinner of pasta and chicken, or the awesome ice-cream dessert accompanied by steaming hot coffee, but rather because of the camaraderie between caregivers and their friends and families, teachers and other staff, and the students themselves. A camaraderie that was shared by mostly strangers who had come together to enjoy the simple pleasure of watching their children who are so often ignored, or even despised, by society receive an award for their achievements no matter how small they appear in the eyes of those who don’t understand mental illness.


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Respite Caregiver

  • Judy Kokoski: Respite Caregiver

Judy Kokoski, Respite Caregiver

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

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

Here are Judy’s thoughts on the subject:

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

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

The most enjoyable aspects of my job are:

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

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

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

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

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

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

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

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

Thank you.

Judy Kokoski

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


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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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Activities For Children with Disabilities

While we know “time for us” is important while raising disabled children, equally important is “time for them”. While raising my mentally disabled grandchildren, one of the resources I found extremely helpful was the Hamilton (ON) Culture and Recreation Program. Due to my financial limitations, the Recreation Fee Assistance Program enabled my grandchildren to swim for free, for one year, at any of the Hamilton-Wentworth Recreation Centres; plus, a choice between a free week of camp or registration in recreational programs, or day camp during PA days, to a maximum of $150 per child, per year. There is also the opportunity to apply for a 50% fee assistance for a City’s affiliated sports program to a maximum of $100 per child, per year. To qualify for the assistance program there are stipulations, so go to www.hamilton.ca/cultureandrecreation/ for full info on how to apply.

Another service is Hamilton and District Extend-A-Family which offers friendship programs and respite to challenged children and teens and their families. Extend-A-Family offers six programs that serve the special needs community:

  • The Buddy Program – An individual volunteer befriends a child with special needs to provide respite to the family by taking the child on outings
  • The Junior Buddy Program – A volunteer provides respite to the family by visiting the special needs child in their home or by accompanying the caregiver on outings
  • The Program Buddy Program – A volunteer will meet the special needs child at ASD/Recreation Program and engages the child during the event
  • The ASD/Recreation Program – Events are offered at least six times a month in the community and are planned and supervised by the ASD/Recreation Coordinator with the help of volunteers
  • The Host Program – A volunteer family befriends a child with special needs and takes them out of the home to provide respite for the parents and other siblings
  • The Summer Support Program – Summer Support Workers help to supervise group activities throughout the summer in addition to working with children one-on-one.

There is small membership fee, and the ASD/Recreation Program events sometimes require registration and fees. For information visit www.extendafamilyhamilton.synthasite.com or call 905-383-2885. 

Other organizations include:

  •  Big Brothers Big Sisters of Hamilton and Burlington at www.callbigbrothers.com is a mentoring organization for children and youth whose goal is to inspire and empower young people to reach their full potential. 
  • Mountain Kidz Klub, is an organization with the goal of providing a safe and welcoming environment to the youth of our community. Website www.mountainkidzklub.com.
  • Local Scouts/Guides programs are worth checking out.
  • Boy/Girls Clubs of Hamilton  at www.kboysandgirlsclub.com.
  • Hamilton Libraries also offer many programs for children and teens.
  • The “Y” which also offers fee assistance to those on limited income.
  • More organizations are listed in detail on the website of Inform Hamilton at www.inform.hamilton.ca.

I also recently discovered ACCESS 2 ENTERTAINMENT card which provides free admission (or significant discount) for support persons accompanying a person with a disability at member movie theaters across Canada. The person with the disability pays regular admission. For more information call Easter Seals Canada at 416-932-8382, website: http://www.easterseals.ca.

Other Recreation Programs for Kids with Special Needs

Funding for Recreation Programs

Having posted all that, while all these activities are undoubtedly of great help to caregivers of challenged children, from my own experience the most difficult part for me was actually getting my grandchildren to agree to attend any program. All suffer from anxiety and poor social skills and to get them out the door to attend social activities was often a hair-pulling (mine) exasperating experience which invariably saw them running to the door, not in anticipation of having fun with a group of kids, but to escape being registered in something they preferred not to do. Oh boy, there goes my respite again!