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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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!


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CONTACT HAMILTON, Hamilton, Ontario

CONTACT Hamilton, of Hamilton Ontario is an entry point for services for children, youth under 18 who have social, emotional, behavioural or psychiatric and/or development concerns, and for adults with developmental disabilities, and who live in Hamilton, Ontario.

According to their brochure…. CONTACT Hamilton provides:

  • Information about available services
  • Central intake and referral
  • Coordination of services
  • Planning for the children’s and developmental services systems

The brochure continues…Who Can Refer To CONTACT?

  • Anyone can contact us directly. This includes the person in need of services, a family member, school personnel, physician or community agency. A physician’s referral is not required.
  • There is no fee for Contact’s services. Contact Hamilton is funded by the Ministry of Community and Social Services and the Ministry of Children and Youth Services.

Over the past several years, while raising mentally disabled grandchildren, I have used this service many times to either register the children for services, or to gather information appropriate to their needs. While the staff are extremely helpful and the service does not necessarily require a visit to the CONTACT office for an interview, I found assessing my grandchildren’s behaviours via telephone interviews difficult as the focus is upon each child’s development and mental health. Plus, over the years, after having been acclimatized to my grandchildren’s challenging behaviours I might have unintentionally downplayed their problems. Upon the realization that this could possibly be causing my grandchildren to be exempted from programs they deserved and required, I learned to be more assertive  with my answers during phone interviews.

For more information on services, call CONTACT Hamilton at 905-570-8888

email info@contacthamilton.ca

website contacthamilton.com