Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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FASD Teens and Substance Abuse

Teens with FASD often struggle with interpreting the body language and expressions of others. This became apparent to me through my youngest grandson’s inability to sense threatening behaviour or, at the least, the depth of the threat; often seeing the behaviour as comical, or engaging. This struggle also reveals itself through his misinterpreting the positive intentions of those in the medical field or police force. Often, in social settings, he mistranslates the social cues of his peers causing strife or offence among the group. Because Teens with FASD struggle in this area they are more likely to be influenced by unsuitable peers and as a result get into criminal activities or substance abuse.

Contacting your doctor for preventative strategies is always a good idea. There are also websites that offer strategies should you need help:

 

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Social Worker: Residential Care

…“Unable to control my granddaughter’s outbursts, when the time came for me to consider registering her in residential care, I was very nervous as I thought it was tantamount to sending the child to prison. But after speaking with the staff and attending orientation sessions I felt reassured and soon realized the resident was family oriented and the staff very supportive. To offer support to other caregivers who are considering residential care, I asked Juliette Corby, a social worker at Lynwood/Charlton Residential Unit to give parents/caregivers advice around placing a child in residence.”…

Here is Juliette’s post:

Considering Residential Treatment

For families with children having complex mental health and behavioural concerns, the journey that leads to residential treatment is often a long and difficult one. Parents frequently feel that residential treatment is their last hope as less intrusive treatment options have all been exhausted.

The idea of residential treatment for children is often overwhelming to parents. When considering this route parents may find themselves weighing the benefits and risks, potential outcomes, the intensity of programming and commitment required, as well as impact on the whole family. Fear due to stories heard and feelings of guilt as though they are abandoning their children or giving up on them are not uncommon for parents as they weed through the pros, cons and preconceptions of residential treatment.

Many parents have found it helpful to consider this as being a positive step that the family can take together. If you are a parent or guardian who has arrived at the doorstep of a residential treatment centre take the time to look around, ask questions, and consider how the program may suit your family and child.

Juliette Corby, Social Worker
Residential Program
Lynwood Charlton Centre, Hamilton, ON


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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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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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Early Words, Hamilton, Ontario

Each of my mentally disabled grandchildren struggled with learning speech. Thankfully there is help and an initial trip to my family doctor regarding their difficulties pointed me in the direction of a program called Early Words which offers a Preschool language and Speech Program, an Infant Hearing Program, and The Blind – Low Vision Early Intervention Program. I learned I could directly refer the child for an assessment so I called Early Words and an initial home interview with a speech language pathologist was arranged and the child’s development discussed. From there the first step was a hearing test to determine if the child’s low speech development was caused by an inability to hear properly. When it was determined that hearing was not a problem I was advised to place the child in a therapeutic daycare setting to help them learn from other children. While in the daycare, the child was observed by a speech language pathologist from Early Words and as a result a program was implemented in the daycare to help the child with vocabulary.

My youngest grandson was also enrolled in a one-to-one six-week program with a speech therapist as his needs were greater than his siblings. The daycare environment helped my grandchildren not only with their speech, but also encouraged them to interact more positively with less aggression toward peers, and to learn to take instruction from authority. However, due to my financial limitations, I did have to apply for daycare subsidy, and discovered finding a daycare opening for each child an enormous hurdle. It took a lot of determination, much patience, a little aggression, and numerous phone calls to various daycare centers before locating a suitable opening.  It was during my eldest grandchild’s placement in daycare that I was encouraged to register for free parent/child workshops offered by Hamilton Health Sciences at various clinics throughout Hamilton, Ontario which offer strategies to parents of children with disabilities, delays, and aggressive behaviors.

Early Words is a preschool speech and language service and works with children up to six years of age. They have a very informative website at earlywords.ca or phone (905) 381-2828. If you are interested in the parent/child workshops offered by Hamilton Health Sciences, browse the workshop guide at communityed.ca.


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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