Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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FASD Marathon

Get Your Running Shoes On

Running An FASD Marathon!

 

 

 

 

 

 

 

I once heard it said that raising children with Fetal Alcohol Spectrum Disorder is like running an FASD marathon. At the time, I wasn’t quite sure what the individual meant but, as my grandchildren with Fetal Alcohol Syndrome progress through their teenage years, I now know exactly what it means:

  • RUN one step ahead of them. Know their moods. Recognize the onset of a meltdown.
  • EXPECT setbacks, but FORGE AHEAD.
  • Know this takes STAMINA and FOCUS and diminishes ENERGY.
  • PLAN A STRATEGY to prevent losing to their defiance.
  • Stay ON TRACK.
  • STAY HEALTHY so you can cope with the behaviors waiting to TRIP YOU UP.
  • Don’t FALL, never FAIL, NEVER GIVE UP.
  • KEEP YOUR EYE ON THE FINISH LINE; only when night falls can you say you WON.

You see, it is a marathon. So get on those sneakers and start running! I’m sure many caregivers of teens with FASD can come up with more tips on winning the FASD marathon. So, let’s hear them. Please leave a comment.

Please check out my memoir: Two Decades of Diapers, and my other books at:

 

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FASD Printouts

As my mentally disabled grandchildren have FASD, for the past few months, I have been attending a Caregivers FASD Support Group in Hamilton, ON. The group is held once a month and offers both daytime and evening sessions, during which we participants discuss the problems we face while raising children with FASD, and learn strategies on how to diminish those problems.

During a recent session we received a hand-out titled: All About Me! It truly is so worth the time and effort going to the website where this printable can be found, and printing out a copy for your child. It’s a way for people who matter to learn more about the child and his/her struggles, such as: teachers, educational assistants, camp counselors, supervisors and volunteer drivers during school field trips, respite workers, family and friends, and neighbours, etc.

In the printout you will find areas to complete with descriptions of your child’s abilities and strengths: Getting to know Me; Medical History; My Emotional Responses; What Works; The Best Environment; and information about FASD for people who are working with the child. 

On the website: http://www.fasdwaterlooregion.ca there are other printouts your child and adults involved in his/her life will benefit from: An Emotions Vocabulary Chart; Identity Information Cards; An Informational Booklet for Siblings of an FASD Child; Picture Cards/Visual Schedules, and other valuable information for caregivers of children with FASD.

This website is a definite MUST to visit if you have any interest in FASD. Or if you would like information on the Caregivers FASD Support Group in Hamilton, ON, please call Melanie White at 905-527-3828 ext. 273.

 


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What Is Specialized School Programming: High School?

Today, I had an appointment, along with other parents, to tour a specialized classroom that my two eldest mentally disabled grandchildren might be attending when they begin high school. I have to say up front that I was pleasantly surprised by the enthusiastic way in which we were welcomed by the staff of the program, plus, their efficiency in answering our questions about specialized programming, and also their interest in transitioning disabled children from high school into inter-dependent adult living including the workforce.

At the time of writing this, a decision has yet to be reached as to whether this will be the high school my grandchildren will be attending, so I have to withhold my excitement for now, but for readers who are curious about specialized programming in high school, the following notes I quickly scribbled, while trying to keep up with the discussion, might be of interest.

At this school:

  • There are three classes in the specialized programming: Comprehensive, Autism, and Developmentally Delayed. The tour I attended was for the Comprehensive Program.
  • In the Comprehensive Program, the graduation age is twenty-one.
  • In all three classes combined there is a total of ten Educational Assistants.
  • The Comprehensive Program is geared to students with a minimum grade one or two reading level, plus simple math. Below that, the student would be placed in the Developmentally Delayed program.
  • The students work from the same timetable daily which is important as mentally disabled children prefer structure with as less change as possible, although activities do vary minimally, such as: during cooking class the students will learn to make different meals each time.
  • The students learn life-skills. For example: cooking, shopping, socializing, hygiene, fitness, transportation (taking a bus from A to B without losing their way).
  • Many people (which, before this tour, included me) don’t realize that mentally disabled children can be musically proficient, so I was pleased to learn that specialized programming encourages the student’s skills and confidence through performances in front of other students and parents.
  • Communication between parents and teachers is important to the staff and so daily agendas containing pertinent comments regarding the child’s day are used, plus telephone communication on a regular basis is encouraged.
  • Although registered in specialized programming, students could be assigned an IEP to ensure their individualized needs are continually being met (See post: What is an IEP?).
  • The students are constantly supervised during the school day and travel with a member of staff whenever they leave the classroom (e.g. going to the school cafeteria for lunch, and helping the student to make change while paying for lunch).
  • The staff encourages one-to-one friendships between the students. This particular school has a Best Buddies program to help utilize that goal. There are also after-school activities designed to generate friendships between students such as school dances.
  • When a student helps with necessary work such as clean-up, they receive a freebie snack.
  • The students are encouraged to participate in co-op placements with businesses in their area, resulting in many students finding positions in the workforce upon graduation.
  • I asked if bullying of the challenged children by the mainstream school children was more frequent than bullying of non-disabled students, and was met with a chorus of denials by the staff who assured me they are constantly aware of possible bullying and keep on top of any potential victimizing situations.

If you live in the Hamilton-Wentworth district of Ontario, please go to http://www.hwdsb.on.ca for further information about specialized school programming.

UPDATE: 

I’m extremely pleased to report that my two eldest grandchildren with mental disabilities have been accepted into a Comprehensive Class: Living & Learning Program at a Secondary School for September 2013.

I took my two grandchildren on a recent tour of their new classroom, so they could meet the Teacher and Educational Assistant, and also their fellow students. The classroom will be their home until they are twenty-years of age, during which time they will learn much needed life skills for independence and will get support and help for securing workplace experience and hopefully future employment.

After we had been introduced to everyone in the class, my grandkids were taken on a tour of the school by several of their classmates, during which time the teacher explained to me the various program elements offered in her class, which include:

Functional Literacy:
A reading program which includes a combination of independent reading, guided reading, and shared reading. Materials include – novel studies, magazines, maps, library books, pamphlets, calendars, etc. Writing program includes reading responses, journal writing, resumes, filling out forms, etc. Speaking opportunities include oral presentations, sharing work, role-playing, etc.

Functional Numeracy:
Foundational skills are practiced through hands-on math manipulative, role-playing, environmental numeracy (looking at bowling scores, grocery receipts, menu items, etc.) worksheets and computer drills. Topics include: money, telling time, number sense (adding, subtracting, multiplying, dividing), estimating, weather charts and temperature graphs, shopping, time management, etc.

Vocational Skills:
All students learn job readiness skills such as: resumes, interviewing, positive attitude, problem solving, etc. Senior students participate in Transitional Work Experience Program (TWEP) where the EA takes 1-3 students to a job placement. Students in the past have worked at: Fortinos, Little Caesar’s Pizza, Dollarama, Blockbuster Video, local public schools, and Value Village.

Physical Skills:
Students learn about healthy living and improve motor skills through swimming, bowling, outdoor recreation, physical education, games and leisure activities.

Daily Living Skills:
All students participate in daily classroom jobs such as: preparing food, washing and drying dishes, setting-up the agenda, putting chairs up and down, etc. Class activities include how to ride buses safely in the community, preparing healthy meals, washing clothes, healthy relationships, etc.

Pathways Plan:
Students learn about transitions by using a daily agenda and monthly calendar.

Instructional Practices include:

  • Individualized planning based on student needs
  • Combination of independent and group work
  • Use of hands-on materials
  • Experiential learning through “doing” – Field Trips

This class is an excellent environment in which, over the next several years, I am sure, my grandchildren will thrive and learn skills designed to provide them with a solid foundation for life as adults with disabilities.

Some times, amazing things do happen!


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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 Selective Mutism?

I’m not sure if my youngest mentally disabled grandson has Selective Mutism as he hasn’t been identified as having such, but after comparing his symptoms, especially in early childhood, to facts I have read on websites, I believe there is a strong possibility he does. In fact, thinking about it now, I believe my eldest grandson might have the disorder also, as he would never speak to anyone outside of the home but just stand and stare when being spoken to. Even at his age of sixteen today, he still has difficulty communicating with strangers, never voicing his opinions, and either just nodding or shaking his head when asked questions.

One of the websites I browsed for info on Selective Mutism was http://www.minddisorders.com whose definition of Selective Mutism is… a childhood disorder in which a child does not speak in some social situations although he or she is able to talk normally at other times. 

The article continues with … Selective mutism is characterized by a child’s inability to speak in one or more types of social situations, although the child is developmentally advanced to the point that speech is possible. The child speaks proficiently in at least one setting, most often at home with one or both parents, and sometimes with siblings or extended family members. Some children also speak to certain friends or to adults that are not related to them, but this variant of selective mutism is somewhat less common. The most common place for children to exhibit mute behaviour is in the classroom, so that the disorder is often first noticed by teachers.

Causes and Symptoms…The symptoms of selective mutism are fairly obvious. The child does not talk in one or more social situations in which speech is commonly expected and would facilitate understanding. Some children with selective mutism do not communicate in any way in certain settings, and act generally shy and withdrawn. The disorder is also often associated with crying, clinging to the parent, and other signs of social anxiety. Other children with the disorder, however, may smile, gesture, nod, and even giggle, although they do not talk.

This website offers a lot more information on Selective Mutism as do other sites such as: http://www.anxietynetwork.com and http://www.asha.org.

Fortunately, my grandson, who is currently registered in a residential care program is receiving a lot of help from the staff regarding his reluctance to speak to adults or when adults are around. His current teacher at the school where my grandson attends a specialized program is also using strategies which aid in bringing him “out of his shell” and giving him the confidence he needs to take the next step in openly communicating with adults (see my post: The Quiet Child).

If you believe your child has Selective Mutism disorder, contact your doctor to discuss the situation and for information on how you can get a diagnosis plus help locating services for your child.


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Parenting Support

Recently, to pass the time while in a waiting area at Chedoke Hospital, Hamilton, Ontario, I browsed the brochure rack for any information regarding services that might help me better raise my mentally disabled grandchildren. One I spied was a leaflet that promoted parenting support in Hamilton, Ontario.

As the leaflet says…. Parenting is not always easy. It then asks what choice you would make if your child was upset and crying: Ignore, Get Mad, or Cuddle? There was a check mark in the Cuddle box. It also explained that your relationship with your child is very important. How you respond to your child makes a difference in your child’s behaviour, what your child learns and how your child feels about themselves.

It also reminds us that… Positive parenting is responding to your child in a sensitive way. To respond in a sensitive way, look at your child’s cues. Cues are signals that tell you what your child needs. Some examples of cues are smiling, turning away or crying.

Responding sensitively to your child’s cues helps:

  • Create a safe and loving environment
  • Build a strong relationship with your child
  • Your child feel good about themselves
  • Your child learn to get along with others

To use a positive parenting approach, it is important for you to:

  • Understand what is normal for your child
  • Look at your child and their surroundings
  • Respond sensitively to your child
  • Grow as a parent… you are learning too!

This reads as a great support service for parents of both non-disabled and disabled children, so if you live in Hamilton, Ontario, or its surrounding areas and would like more information visit http://www.hamilton.ca/parenting to find answers to many parenting questions, or call Health Connections at 905-546-3550.

Another parenting support program servicing Hamilton, Ontario and surrounding areas is: Right From The Start – An attachment course for parents of babies under two. Its flyer explainsRight From The Start is an 8-session course that uses video clips, problem solving discussions and skill-building exercises. Group leaders, who are child development professionals, guide parents using methods shown to be effective in reducing parenting stress, and improving parent-child relationships. Parents work together on solutions to parenting challenges, share ideas, and explore the many faces of parenting.

To know if the program is right for you, the flyer asks:

  • Are you unsure of your parenting skills?
  • Does parenting make you feel anxious?
  • Would you like to avoid or change parenting styles that were practiced when you were a child?
  • Does your child have special medical and/or developmental needs?
  • Is your child fussy?
  • Do you want to feel more comfortable with your baby?

If you answered “yes” to any of these questions and you have a baby under two, then Right From The Start is right for you. Right From the Start is a free service. To register or for information, call 905-521-2100 ext. 77418.

Ontario has also recognized the age of eighteen months as a milestone in a child’s development and encourages parents to visit their family physician or other health care provider at that time in order to discuss their child’s development. During the appointment, parents are provided with a development checklist and information on typical stages of child development. The checklist can be located at http://www.ndds.ca and is free to access. This visit can lead to early identification of developmental concerns and a referral to specialized community services for the child. This eighteen month discussion with your health care provider is called the “Enhanced 18-Month Well-Baby Visit”.

When I discovered this service through a leaflet displayed at my local library, I was very excited as this program is long overdue and one that would have helped my mentally disabled daughter, and my mentally disabled grandchildren be identified with developmental concerns long before they actually were.


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Sterilization?

As a young woman, I remember the controversy over the sterilization of the mentally disabled and recall how horrified I was at the thought that someone who thought they knew best could heartlessly take away the right of anyone to choose to be a parent – but that was long before I experienced the challenges I now face as a grandmother raising mentally disabled grandchildren.

In my post, My Story, I explain how my adopted, mentally disabled daughter gave birth to seven children by the time she was twenty-three, and how I was granted custody of four of those children, with the other three being adopted. Now, while I’m still horrified at the thought of any mentally disabled person being sterilized against their will, I’ve certainly softened towards what is known as substitute decision making on behalf of the mentally challenged.

I know this is a very sensitive subject, but believe it’s one that I shouldn’t omit on my website. To do so would be cowardly on my part, especially given my experience and circumstances surrounding mentally disabled children. So please bear with me as I struggle to voice my opinion without deliberately trying to invoke criticism. Although I do welcome any reader’s comments on this or other subjects!

You see, when my teenage unmarried daughter became pregnant with her first child, I truly believed it would be the one and only time; with her learning her lesson so to speak. But, soon after she had left home, I heard from the CAS that my daughter was pregnant with a second child. My heart sank at the news as I realized that her pregnancies were not going to end unless drastic steps were taken to persuade her to use birth control, and knowing her as I did, I suspected she wasn’t going to agree to that anytime soon, and so, by the age of twenty-three, she had given birth to seven children with each one being removed at birth due to her inability to parent. Sadly, all seven children are mentally disabled due, not only to genetics, but to her intake of alcohol and illegal drugs during the pregnancies.

So now, as a grandmother raising mentally challenged grandchildren, one of whom is a teenage granddaughter, I refuse to allow that whole unfortunate situation to repeat itself, and so, as a result, became a substitute decision maker for her regarding the birth control pill. How long she will agree to take it I’m not sure, but while she lives with me, I have made it compulsory that she continue doing so. If, at the age of eighteen, she decides to stop taking the pill that will be the day I decide whether I can continue to be her guardian, as, should the situation arise, I absolutely refuse to be a GREAT-grandmother raising GREAT-grandchildren!