Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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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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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!