Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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School Memories

Wanting my grandchildren to get the best education possible regarding their mental disabilities, and to learn about Christianity, I registered them in New Testament Baptist Academy in Hamilton, Ontario. Over the course of several years, all four completed the kindergarten program taught by Mrs. Peters. The photos below show them graduating from her class ready to begin elementary grades in the Academy’s learning centre.

Given their learning difficulties I know they challenged Mrs. Peters each day but, through her dedication and hard work, despite their disabilities, each of my grandchildren learned to read and write. Her one-to-one teaching methods afforded them the ideal working environment keeping them focused at all times.

As they progressed through the learning centre, the work became more difficult, so around grade five I made the decision to switch them to the public school system where help for their learning disabilities was available, but I’ll never forget the effort and determination of Mrs. Peters and the staff and volunteers at the Academy, all who share in the success my grandchildren enjoy today.

Below, are photos of my grandchildren graduating from kindergarten. My eldest granddaughter is pictured with Mrs. Peters, their teacher.

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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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Sexual Health Programs

If you are sexually active and live in Hamilton, Ontario, or the surrounding area and are looking for information on sexual health, there is a website that provides this information at hamilton.ca. Click Public Health and Social Services, and in the A-Z list click S for Sexual Health.

The website states it offers information on:

  • STD (sexually transmitted disease) Clinic
  • Anonymous HIV testing
  • Sexual Health Clinics
  • Street Health Clinic
  • The Van Needle Exchange Program
  • Sexual Health Information Line
  • Free Condoms in Hamilton If you click on the free condoms post you will find instructions on how to use either a male condom or a female condom, plus the locations where you can receive free condoms.

The website offers more Information including:

  • Age of Consent in Canada
  • Questions & Answers
  • Statistics in Hamilton
  • Fact sheets for Sexually Transmitted Disease
  • Links and other websites
  • Mandatory Blood Testing Act 2006
  • Being Sexually Exploited Find out what sexual exploitation is, and learn Online Safety Tips.

Sexual Health Information Line for Hamilton: 905-528-5894 (confidential, no call display)
Email: publichealth@hamilton.ca

A few years ago, while waiting in line at the doctor’s office reception to check in for my appointment, a girl of high-school age was waiting ahead of me and when it was her turn she leaned right in and whispered something to the receptionist, who promptly looked up and with a loud voice announced, “OH NO! YOU NEED A WALK-IN CLINIC. IF YOU ARE NOT A PATIENT HERE THE DOCTOR CAN’T SEE YOU!” with which the young lady turned on her heels and ran toward the exit.

I felt my heart sink. There was obviously something very important the young girl needed help with, but didn’t know where to go. I’m not saying it was her sexual health, but from her embarrassment when the receptionist decided to announce to the whole world that there was no room for her at the inn, it was pretty clear, to my mind anyway, that this young woman, who wasn’t with a parent, was looking for help for a very private matter. I think about her often, and wonder if she got the help she seemed so desperately to need.

So, if you are looking for a doctor in the Hamilton, Ontario area call the Hamilton Academy of Medicine at 905-528-1611 or go to hamiltondoctors.ca to find out which doctors in your area are accepting new patients. You will need to call the doctor’s office to set up an appointment before you go, and remember to take your health card.

Or you can call the Health Care Connect Program at 1-800-445-1822 or go to health.gov.on.caThere you will find help connecting to a doctor or nurse practitioner who is accepting patients in your community.

If you are a minor male or female and are being sexually abused, call the Hamilton, Ontario police at 911; and the Children’s Aid Society at 905-522-1121, or after hours emergency at 905-522-8053 or the Catholic Children’s Aid Society at 905-525-2012, or after hours emergency at 905-522-5606.

If you are a male or female and in a sexually abusive relationship and need help getting out, call the Hamilton, Ontario police at 911. For females, also call SACHA sexual assault center at 905-525-4162, http://www.sacha.ca. If you are a male or female victim of rape, incest, or human trafficking, call Hamilton, Ontario police at 911.

If you are a minor who is being sexually abused and cannot speak to your caregivers about it, call the Hamilton, Ontario police at 911 and the Kids Help Line at 1-800-668-6868. The website is KidsHelpPhone.ca. Keep telling people until someone listens.


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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 an Anxiety Disorder?

Read: My Story – How I Became A Grandmother Raising Grandchildren. Posted July 2012

  • What is an Anxiety Disorder?

All four of my mentally disabled grandchildren suffer with anxiety disorders, but not all express them in the same way. For example, the third child is able to form friendships with children, but when an adult comes on the scene, he panics. And not just when confronted by adult authority figures like caseworkers or teachers, but all adults. Usually trying to appear as invisible as possible, he either buries his head in a cushion or in his hands or hoodie, and refuses to speak. The youngest, on the other hand, speaks up for herself against adults (a little too much), but finds making and keeping friends much more difficult, often allowing her anxiety to disrupt playtime due to her need to always be in control of every situation. When it becomes clear that friends are in disagreement with her, she panics and can lash out both verbally and physically.

I found this information about anxiety disorders at http://www.webmd.com, but there is an Ontario website at http://www.anxietydisordersontario.ca.

  • There are many types of anxiety disorders that include panic disorder, obsessive compulsive disorder, post-traumatic stress disorder, social anxiety disorder, specific phobias, and generalized anxiety disorder. Anxiety is a normal human emotion that everyone experiences at times. Many people feel anxious, or nervous, when faced with a problem at work, before taking a test, or making an important decision. Anxiety disorders, however, are different. They can cause such distress that it interferes with a person’s ability to lead a normal life. An anxiety disorder is a serious mental illness. For people with anxiety disorders, worry and fear are constant and overwhelming, and can be crippling.

What Are the Types of Anxiety Disorders?

There are several recognized types of anxiety disorders, including:

  • Panic disorder: People with this condition have feelings of terror that strike suddenly and repeatedly with no warning. Other symptoms of a panic attack include sweating, chest pain, palpitations (irregular heartbeats), and a feeling of choking, which may make the person feel like he or she is having a heart attack or “going crazy.”
  • Obsessive-compulsive disorder (OCD): People with OCD are plagued by constant thoughts or fears that cause them to perform certain rituals or routines. The disturbing thoughts are called obsessions, and the rituals are called compulsions. An example is a person with an unreasonable fear of germs who constantly washes his or her hands.
  • Post-traumatic stress disorder (PTSD): PTSD is a condition that can develop following a traumatic and/or terrifying event, such as a sexual or physical assault, the unexpected death of a loved one, or a natural disaster. People with PTSD often have lasting and frightening thoughts and memories of the event and tend to be emotionally numb.
  • Social anxiety disorder: Also called social phobia, social anxiety disorder involves overwhelming worry and self-consciousness about everyday social situations. The worry often centers on a fear of being judged by others, or behaving in a way that might cause embarrassment or lead to ridicule.
  • Specific phobias: A specific phobia is an intense fear of a specific object or situation, such as snakes, heights, or flying. The level of fear is usually inappropriate to the situation and may cause the person to avoid common, everyday situations.
  • Generalized anxiety disorder: This disorder involves excessive, unrealistic worry and tension, even if there is little or nothing to provoke the anxiety.

What Are the Symptoms of an Anxiety Disorder?

Symptoms vary depending on the type of anxiety disorder, but general symptoms include:

  • Feelings of panic, fear, and uneasiness
  • Uncontrollable, obsessive thoughts
  • Repeated thoughts or flashbacks of traumatic experiences
  • Nightmares
  • Ritualistic behaviors, such as repeated hand washing
  • Problems sleeping
  • Cold or sweaty hands and/or feet
  • Shortness of breath
  • Palpitations
  • An inability to be still and calm
  • Dry mouth
  • Numbness or tingling in the hands or feet
  • Nausea
  • Muscle tension
  • Dizziness

What Causes Anxiety Disorders?
The exact cause of anxiety disorders is unknown; but anxiety disorders — like other forms of mental illness — are not the result of personal weakness, a character flaw, or poor upbringing. As scientists continue their research on mental illness, it is becoming clear that many of these disorders are caused by a combination of factors, including changes in the brain and environmental stress.
Like certain illnesses, such as diabetes, anxiety disorders may be caused by chemical imbalances in the body. Studies have shown that severe or long-lasting stress can change the balance of chemicals in the brain that control mood. Other studies have shown that people with certain anxiety disorders have changes in certain brain structures that control memory or mood. In addition, studies have shown that anxiety disorders run in families, which means that they can be inherited from one or both parents, like hair or eye color. Moreover, certain environmental factors — such as a trauma or significant event — may trigger an anxiety disorder in people who have an inherited susceptibility to developing the disorder.

How Common Are Anxiety Disorders?
Anxiety disorders affect about 19 million adult Americans. (My note: 12% of Canadian population). Most anxiety disorders begin in childhood, adolescence, and early adulthood. They occur slightly more often in women than in men, and occur with equal frequency in whites, African-Americans, and Hispanics.

How Are Anxiety Disorders Diagnosed?
If symptoms of an anxiety disorder are present, the doctor will begin an evaluation by asking you questions about your medical history and performing a physical exam. Although there are no lab tests to specifically diagnose anxiety disorders, the doctor may use various tests to look for physical illness as the cause of the symptoms.
If no physical illness is found, you may be referred to a psychiatrist or psychologist, mental health professionals who are specially trained to diagnose and treat mental illnesses. Psychiatrists and psychologists use specially designed interview and assessment tools to evaluate a person for an anxiety disorder.
The doctor bases his or her diagnosis on the patient’s report of the intensity and duration of symptoms — including any problems with daily functioning caused by the symptoms — and the doctor’s observation of the patient’s attitude and behavior. The doctor then determines if the patient’s symptoms and degree of dysfunction indicate a specific anxiety disorder.

How Are Anxiety Disorders Treated?
Fortunately, much progress has been made in the last two decades in the treatment of people with mental illnesses, including anxiety disorders. Although the exact treatment approach depends on the type of disorder, one or a combination of the following therapies may be used for most anxiety disorders:

  • Medication: Drugs used to reduce the symptoms of anxiety disorders include anti-depressants and anxiety-reducing drugs.
  • Psychotherapy: Psychotherapy (a type of counseling) addresses the emotional response to mental illness. It is a process in which trained mental health professionals help people by talking through strategies for understanding and dealing with their disorder.
  • Cognitive-behavioral therapy: People suffering from anxiety disorders often participate in this type of psychotherapy in which the person learns to recognize and change thought patterns and behaviors that lead to troublesome feelings.
  • Dietary and lifestyle changes
  • Relaxation therapy

Can Anxiety Disorders Be Prevented?
Anxiety disorders cannot be prevented; however, there are some things you can do to control or lessen symptoms:

  • Stop or reduce consumption of products that contain caffeine, such as coffee, tea, cola, energy drinks, and chocolate.
  • Ask your doctor or pharmacist before taking any over-the-counter medicines or herbal remedies. Many contain chemicals that can increase anxiety symptoms.
  • Seek counselling and support after a traumatic or disturbing experience.

If you believe your child is suffering with any of the anxiety disorders described above, see your doctor for help, or for more information on anxiety disorders in Ontario, Canada, go to http://www.anxietydisordersontario.ca.


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Child and Adolescent Services of Hamilton, Ontario

According to the http://www.hamilton.ca website, Child and Adolescent Services is an…

  • Outpatient Children’s Mental Health Centre funded by The Ministry of Children and Youth Services. Our staff includes Child and Youth Workers, Clinical Therapists, Psychometrists (specialists in psychological testing), Marriage and Family Therapists, a Psychological Associate and Social Workers. Together, we have a wide variety of skills and experience.
  • We offer family therapy, individual counselling, play therapy, psychotherapy, psychological testing and consultation to community agencies and facilities. Our Forensic Unit offers services for those in trouble with the law (assessments for fire setters, sex offenders, Young Offenders and post dispositional treatment for Young Offenders). We also offer specialized treatment services for trauma and dissociation.
  • The programs at Child and Adolescent Services are designed to meet the unique needs of our clients. Our staff start with the basic premise that all families have strengths and resources. Our goal is to identify these unique strengths and resources, and to support families who are working towards a positive future. We believe in the uniqueness of individuals and their right to discreet, confidential services.

We value each person as an important and unique individual as perceived by self and others.

  • The family is the natural place of the child while affirming the child’s need and right to interact with the community and to be safe in all environments.
  • Respect the rights of others to hold values and beliefs different from those we hold ourselves.
  • Treatment, research and prevention which utilizes several disciplines and partnerships within the community and beyond.
  • Good morale and the contributions of all staff and others involved with clients.
  • Child and Adolescent Services’ strategic involvement in the community (planning).
  • Clients have the right to be involved in planning their services and have rights to information where appropriate.

As a grandmother raising grandchildren with ADHD, FAS, Intellectual disabilities, and behavioural disorders, I am guilty of being overly confident of their ability to make sound choices, and of being naive about what the future might bring. For some strange reason, when I took custody of my grandchildren, I thought our future together would be bright despite the fact that their birth mother (my daughter), and their fathers suffered from equally or more severe disabilities as the children themselves, so when one of my grandchildren, on becoming a teen, began showing signs of being severely out of control, I put it down to adolescence when I should have been much more aware of the confusion disabled adolescents might suffer as they enter their teen years.

As a result of my grandchild’s actions, the police became involved and he was charged with criminal activity. We as a family were subsequently directed to Child and Adolescent Services of Hamilton, Ontario, for assessments and counselling. Now, I have to admit, after all the emotional turmoil I experienced when seeing my grandchild arrested, charged, and incarcerated, I wasn’t looking forward to being reminded how bad a parent I was by any counselor, so I’m pleased to report that the staff at the Child and Adolescent Centre couldn’t have been more understanding, which certainly took a load of unnecessary guilt off my mind. Fortunately, after a lengthy physiological assessment by C & A, the court decided that the my grandchild should not be placed in custody and was, instead, placed in foster care and assigned a probation officer.

If you live in the Hamilton-Wentworth area and feel you could benefit from the help of Child & Adolescent Services, please call Contact Hamilton at 905-570-8888 or go to www.hamilton.ca and click on Public Health & Social Services, then choose Child & Adolescent Services from the list.


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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!