Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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Removing All Doubt!

During my past two decades of raising grandchildren with mental disabilities, I often wondered if seeking custody had been the right decision. Many people, some of whom I loved, turned their backs on me when I took in my first grandchild. One was a close family member, another who I thought was a good friend, and also a minister whose church I attended when my grandson was first born. Their venomous opinions and haughty judgments worsened the stress I was experiencing, causing me to doubt my decision to raise my grandchildren–would they be better off in foster care?

But now, looking back on those days through these photos, I have to question those negative people’s motives. How can anyone look at the pictures and not smile at the love and childish antics my grandchildren are sharing? Memories are wonderful things and can help a person see their past and the choices they made more clearly and thereby remove all doubt that what they did in the moment was the right thing!

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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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Teen Sex

The expanding phenomenon of grandchildren being raised by grandmothers should be added to the long list of global violations against women for, grandmothers of all nationalities who opt to commit such a substantial part of their lives to their children’s children are often blamed for the situation, disregarded by society, and expected to raise abandoned, orphaned, or otherwise parent-less grandchildren simply because child rearing is considered a normality for women and any hesitation on the grandmother’s part is viewed with disdain.

To address this issue, communities should consider….

  • the enormous emotional, physical, and financial hurdles faced by women who have spent over twenty years raising children, then commit to spend a further twenty raising grandchildren with equal, and in some cases more, love, responsibility, support, understanding, and leadership, while trying to cope with aging, loss of energy, and the huge invasion of their independence as seniors.
  • the fact that any parent can unexpectedly find themselves in the unfortunate position of having to make a decision around raising their grandchild(ren).
  • the need for supports within the community to offset the numerous expectations placed upon the shoulders of grandmothers who, most often, out of compassion rather than ability, elect to become the primary caregiver to a grandchild(ren).

While raising my mentally disabled grandchildren, I have felt neglected by a society whose majority appears to share the opinion that this is a life-style I brought upon myself through poor parenting of my own children.

Neglected because :

  • The government has stubbornly refused to pay me more than 0.97 cents per hour for raising my three grandchildren, whereas if they had been placed in foster care the government would have by now spent hundreds of thousands of dollars providing for them while in care.
  • As a new parent again, I was expected to provide everything a baby, or babies in my case, need in a home to survive – formula, bottles, sterilizer, diapers, clothing, bedding, crib, dresser, change table, high chair, playpen, car seat, potty, stroller, toys, baby swing, etc., with no help from the Children’s Aid Society or anyone else for that matter.
  • The majority of people refuse to recognize the mental disabilities of my grandchildren as a result of inherited genetics and alcohol consumption during pregnancy, and blame their behaviours, instead, on poor grand-parenting.
  • Services to help my mentally disabled grandchildren were slow-coming and pitiful.
  • The attitude of many medical professionals and community volunteers was condescending and less than helpful.
  • As a parent/grandparent my voice is frequently unheard above those of professionals who have the credentials but not necessarily the experience with mental disabilities. Whereas, I believe, in this situation, experience should count ninety-eight per cent over education.
  • People my own age do not want to befriend me as they are empty-nesters and therefore want nothing to do with a grandmother raising young children.
  • The futures of my grandchildren, who basically have no family other than me, are shaky to say the least, for when I die they will probably be young adults unable to care for themselves without supervision – but whose? A question I have yet to have answered sufficiently enough to put my mind at rest.
  • Society refuses to even attempt to understand the emotional turmoil we grandmothers endure while attempting to raise our, often mentally disabled, grandchildren.

But the most important Neglect of all:

  • While society placed emphasis on the full rights of my grandchildren’s biological parents to choose not to use birth control, or to raise their children, or to have access to them, or to financially support them – while growing up, my grandchildren seemed to have very few rights: no right to a secure financial upbringing; no right to public understanding of their mental problems; no right to not be bullied over their mental disabilities; no right to neighbourly concern; no right to be heard when voicing a concern over another’s persons negative attitude toward them; no right to be angry toward parents whose irresponsible choices guaranteed them a lifelong struggle with disabilities.

Grandmothers raising grandchildren is a growing trend downplayed by societies who are not sure what to do with it nor, more importantly, how to stop it. Governments get away with under-funding GRG’s because raising grandchildren is viewed as a natural family responsibility while the grandchild who is being raised, especially, by a single grandmother is being viewed by society as The New Bastard: needy, unloved and unwanted by their parents, offensive to the sensibilities of traditional family values, inferior to peers, non-essential to community enhancement, and a total burden on society.

So what are we to do with this strange and problematic trend?

What Not To Do!

  • Turn a blind eye and hope the problem soon goes away?
  • Unrealistically believe sexually active teens will suddenly see the light and use birth control every time they have sex?
  • Demand teens abstain from sex?
  • Demand teens abstain from alcohol?
  • Insist grandmothers say no to raising their grandchildren and hope that a harsh stint in foster care will ensure the grandchild does not repeat the cycle by parenting an unwanted child in the future?
  • Keep projecting poor parenting skills upon mothers, thereby placing full responsibility for the raising of her future grandchild(ren) at her feet?

None of the above has worked so far, so why continue with the belief that one day they will. My experience tells me that to eliminate the dilemma of grandmothers raising their grandchildren we need to get to the root of the problem which is, the majority of the time, sexually active teens having unprotected sex. I say we, because it will take community involvement to eradicate or, at the very least, reduce the rates of incidents where grandmothers have to become the primary caregiver to grandchildren.

What To Do!

  • Parents/Guardians should discuss birth control with their children, including an explanation of the dangers of the consumption of alcohol while sexually active. Also, it must be made clear to the teen that the caregiver has made the decision not to raise a grandchild should the situation arise. Sometimes all it takes is to set an initial boundary with the teen.
  • A further discussion around the challenges grandmothers face while raising their grandchildren should be continued in schools during sexual health education.
  • Information on the subject should be made available in health care clinics, and hospitals.
  • Brochures promoting the subject of grandmothers raising grandchildren should be made available in public libraries, youth centres, recreation centres and other public places.
  • Information and support for any grandparent considering raising grandchildren should be available from councils on aging.

As stated by the Public Health Agency of Canada in 2008: 

Since schools are the only formal educational institution to have meaningful (and mandatory) contact with nearly every young person, they are in the unique position to provide children, adolescents and young adults with the knowledge, understanding, skills, and attitudes they will need to make and act upon decisions that promote sexual health throughout their lives (p.19).

As stated in Sexual Health Education in the Schools: Questions & Answers (3rd Edition) (Society of Obstetricians and Gynaecologists of Canada, 2004, p.596)

“it is imperative that schools, in cooperation with parents, the community, and health care professionals, play a major role in sexual health education and promotion”

As stated in Sexual Health Education in the Schools: Questions & Answers (3rd Edition)

Surveys of youth have clearly shown that young people in Canada want sexual health education to be taught in school…. For example, a survey of high school youth found that 92% agreed that “Sexual health education should be provided in the schools” and they rated the following topics as either “very important” or “extremely important”: puberty, reproduction, personal safety, sexual coercion and sexual assault, sexual decision-making in dating, relationships, birth control and safer sex practices, and STIs (Byers at al, 20003a). National surveys of youth in Canada have found that schools are the most frequently cited main source of information on sexuality issues (human sexuality, puberty, birth control, HIV/AIDS) (Boyce, Doherty, Fortin & Mackinnon, 20003) and rank highest as the most useful/valuable source of sexual health information (Frappier at al., 2008).

Grandparents should not be expected to make a decision to become a permanent primary caregiver to a grandchild(ren) before supports are accessed. No grandparent fifty years of age or over shall be granted custody of a newborn grandchild. No grandparent fifty-five years of age or over should be granted custody of a grandchild ten years of age or under. No grandparent over the age of sixty should be granted custody of a grandchild.

  • Before the child is placed with the grandparent/s, the grandparent/s must attend a session/s outlining all legal aspects that apply to taking custody of a grandchild pertaining to the location where the adult resides. The session/s should be instructed by an experienced family lawyer with full knowledge of what grandparents experience in the court room when applying for custody. Discussion of parental capacity assessments, the plan of care, and visitation rights of the child’s biological family should be included. Legal financial assistance should be researched, as should what would happen if the grandparent/s take permanent custody of the child only to discover they are unable to cope and want to relinquish custody.
  • Following the session, if the grandparent/s want to continue with their application and temporary custody is granted, the grandparent/s should be required to fulfill several obligations before receiving permanent custody as, once permanent custody is granted, it can be extremely difficult to relinquish.

Obligations, such as:

  • Every three months the grandparent/s must attend a doctor’s appointment for an update on their health and stress level. This medical report should be admitted to the court. If the doctor believes the grandparent is risking severe health problems by continuing to parent the grandchild, the court would need to decide if alternate arrangements should be made for the child.
  • As parenting ideals change from generation to generation, potential custodial grandparents should attend several parenting workshops during the time they have temporary custody. Education; daycare; medical health; vaccinations; stages of development; discipline; healthy eating; exercise; understanding computers and social networking; to name a few important aspects of raising a child, need to be discussed during the workshops.
  • If it appears the child suffers with mental health or behaviour disorders due to genetics or Foetal Alcohol Syndrome, grandparent/s should be made aware of the possible problems they could encounter while raising the child. Resources to aid children with mental health disorders should be introduced to the grandparent/s for future reference. 
  • While a grandparent has the right to permanent custody, this should look vastly different from the permanent custody granted to a younger individual. A grandparent should only be granted part time care with the child going to the homes of other family members or trusted friends on alternate weekends and some evenings. This will avoid the grandparent becoming exhausted by the natural demands of the grandchild. A full commitment for this respite from family members or friends should be signed and admitted to the court. If the grandparent is unable to secure respite the court would need to decide if alternate arrangements should be made for the child.
  • On no account should the grandparent be expected to quit work to care for the child, nor be forced to apply for social assistance. While no person wants to acknowledge that money should effect custody, the financial situation of the grandparent is paramount to the child’s satisfactory upbringing.
  • Most baby items and necessities should be loaned to the grandparent by CAS or a charitable organization until it is known if permanent custody will be granted. That way the grandparents will not suffer the financial loss when having to buy the necessary items only to discover they are unable to care for the child. Only if permanent custody is granted will the grandparent be responsible for the cost of the items.
  • A parent’s aide or public health nurse should visit regularly with the grandparents and child throughout the custody hearing, to confirm the child is being parented appropriately and that the grandparent is able to cope with the responsibility. When the child is placed permanently with the grandparent, follow up visits by the caseworker should continue on a quarterly basis. 
  • A help-line geared to the needs of aging caregivers should be made available 24/7 to assist with support, information, and other appropriate services.
  • The Council of Aging should be informed when a grandparent is granted custody of a grandchild. The grandparent should be assigned a worker or volunteer from the council to oversee the grandparents willingness and ability to continue parenting and to provide telephone support when necessary.

While I realize some of these applications may already be in place, confirmation that each one is working in the best interest of the child and grandparent as opposed to what is in the best interest of CAS funding should be made available to the court. If any one of the above programs fail, alternative placement of the child should be advised.

But just as important is the need for communities as a whole to get involved through education on the dangers of teen drinking plus unprotected sex, and the dilemmas faced by grandparents who choose to raise their grandchild(ren).

 So, let’s get with it! Start talking, start teaching, start a discussion! 

Together we can eliminate the need for parents to raise their children’s children!


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What is an Intellectual Disability?

Just this year, all three of my mentally disabled grandchildren have undergone Psycho-educational testing with a result of two of them being diagnosed with an Intellectual Disability, and the third with a specific learning disability. This diagnoses means that the children are likely to learn and develop significantly more slowly than other children of the same age.

According to Community Living Ontario, at communitylivingontario.ca, an Intellectual Disability is:…a disability that significantly affects one’s ability to learn and use information. It is a disability that is present during childhood and continues throughout one’s life.  A person who has an intellectual disability is capable of participating effectively in all aspects of daily life, but sometimes requires more assistance than others in learning a task, adapting to changes in tasks and routines, and addressing the many barriers to participation that result from the complexity of our society.

When the Psychological Report was compiled and a diagnosis made, many aspects of my grandchildren’s lives and abilities were taken into consideration, i.e.,

  • Reason For Referral (in their case to review their learning strengths and needs for programme planning)
  • Background Information
  • Observations during the assessment
  • Document Reviews of previous assessments and school reports
  • Interviews with the child and myself
  • Assessment Measures which include professional Developmental Tests
  • Behaviour Testing
  • Memory and Learning Testing
  • Individual Achievement Testing

For my grandchildren, I suspect, the testing felt long and arduous as it was completed over several appointments, but each one managed to complete the task, and as a result the older two were placed in a specialized school program for children with learning disabilities. See posts: What is Specialized School Programming? and What is Specialized School Programming: High School?


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Hamilton Arson Prevention Program for Children (HAPP-C program)

Over the years, I’ve come to recognize when my grandchildren become overly anxious about a home or school situation, their disabilities (ADHD, FAS, Intellectual Disability) cause them to do, not really strange, but certainly unrelated things like… oh, I don’t know, setting fire to the house for example.

When two of my grandchildren recently learned their younger sibling would be entering a residential care facility for several months in order to learn behaviour management, they instantly withdrew into anxiety mode, with one setting fire to objects and bedding in her room, and the other building a fire behind a dumpster at a local school.

Over the years, because I have become acclimatized to their strange ways to the point of deeming them normal, I didn’t recognize the severity of this behaviour until I nonchalantly passed the information by one of their caseworkers and noticed the horrified expression on her face.

On her advice, I subsequently called the program coordinator of the Hamilton Wentworth Fire Department’s Youth Program who scheduled an appointment with me and the children and had them answer questions about fire safety, and then spoke to them on the hazards of fire-setting.

About two weeks later, the children attended a meeting at the Child and Adolescent Services of Hamilton, Ontario (see post: Child and Adolescent Services of Hamilton, Ontario) for a fire-risk assessment, where they were assigned separate counsellors who interviewed them and then rated their risk of re-offending. This information was subseqently passed on to the children’s school so the staff could be aware of the possibility of one of the children starting a fire at school, and to the various caseworkers involved with the children.

 If you would like information regarding the Hamilton-Wentworth Fire Department Program, please call: (905) 546-2424 ext. 7794 or (905) 546-2424 ext. 1380


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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!


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Hamilton Health Sciences: McMaster Children’s Hospital

If, like me, you are raising a mentally challenged child, you might benefit from the various courses and workshops available to caregivers through the McMaster Children’s Hospital, Chedoke Site, and its community partners.

When my grandchildren were young and it was determined they had ADHD, FAS, and behaviour issues, I enrolled in several workshops over a period of approximately two years, sometimes taking two classes at a time. Not only did I find the programmes helpful by offering me strategies to use during challenging situations with my grandchildren, but they also made me aware of the struggles the children themselves face on a daily basis. And, of course, I met other caregivers in similar situations to mine and found their stories interesting while offering me the comfort that I was “not alone”. Please check out www.communityed.ca for information on the workshops and courses available. In addition to the programmes and workshops, there are resources available through the Family Resource Centre, located on the 1st floor of the Evel Building at the Chedoke site in Hamilton, Ontario. This provides a large number of reading materials along with other resources related to parenting and child development. Well worth the visit!

Update! One of my grandchildren just brought home from school the latest Guide from McMaster Children’s Hospital. It’s called Growing Together and offers many courses, some offered previously and some new. There are pre-natal programmes for young mothers, teens, and parents plus workshops and courses for parents/caregivers of children 6-8 years of age, such as: COPEing with Toddler Behaviour, Stuttering in the Young Child, 1-2-3 Magic, and the Incredible Years. There are also workshops and courses for parents/caregivers of children 6-12 years of age, such as: COPEing with ADHD, kNOw Fear, Temper Tamers, Managing Meltdowns, and a Lone Mother with Kids Recreation Program. The workshops and courses for parents/caregivers of teens 12-18 years of age offer Parent Support Workshops, COPEing with Teens. For children of any age there is an Autism Spectrum Disorder Presentation, a programme for The Quiet Child, and another for Parenting Your Anxious Child.

There are also workshops for the children and teens to attend like: Kids Klub, GRUB Club, Towards No Drug Abuse, and Teen Talk. There are also many adult programmes offered for Self-Help, Relationship and Marriage issues.

The above is just a sampling of courses offered, so if you would like to know more about the Growing Together programmes offered in Hamilton, Ontario, please visit www.communityed.ca or call 905-521-2100 extension 77243.