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So great to see so many of you at the Connected Families Forum on Saturday!
For those of you who were not able to make it to the Cafe portion, FamilyLink will be hosting an online Chat Cafe!
Stay tuned for the details!Hi Sarah
Can’t wait. We just barely skimmed the surface of What is a meaningful day?At the end of each discussion at the Café participants were asked to come up with the top 3 take away points from the discussion. They are listed below for each topic discussed. Feel free to continue the discussion on any of these topics or any other topic of interest by posting a comment. Remember : you must sign in ( or register if you have not already )to post a comment.
How can we manage stress and give ourselves some relief from our role as caregivers?
- Doing something for ourselves is critical. I have to take care of myself with guilt.
- Make /take time for ourselves. Make sure we find someone to give us that break. Examples: respite services, programs and groups our child can take part in and enjoy. If they are happy – I feel happy and more able to take self-care.
- Strategies: glass of wine, naps walks in nature, walking the dog.
- Mindfulness, prayer, meditation, anything that helps me put things into perspective and gives me courage and strength. Helps me prioritize what is important and let go of the rest. And it helps me let go of others expectations.
- Talking to other parents who truly understand.
- Spend time with friends and not talk about our kids at all.
- Seeing myself as a person other than just a parent. Think about what other things : my interests, my hopes as a person.
- Getting Respite:
- Apply to DSO
- Homemaker services
- Case co-ordinator
- Connecting persons on the ASD spectrum with the arts in the community
- Creating connections
- Making autism more familiar to the community –demonstrating strength not weakness.
- Seeking respite – just call, speak up and have your needs met.
Relationships
- Dating Night – for people with disabilities to meet people
- Not easy – whether family, dating or worker relation. It takes time and patience
- Want a say in who is in the relationship, who is in my family, who is my worker.
How can we best prepare our loved ones for independent living, inside or outside the home?
- The use of technology to promote safety in the community. E.g. “life 360” app with GPS and panic button with programmed phones and emails in case of emergency
- Gradually increasing independence in the home through encouraging / involving in chores and daily living activities, e.g. cooking. Using various aids to help increase safety, e.g. butchers knife, safety burners on stove tops pioneering technology.
- Give responsibilities – to offer opportunities for people to gradually feel more independent.
- Safety plan in the home for emergency / disaster scenarios with clear instructions and visual aids /cues, e.g. what to do in case of fire, flood or black out.
- Talking to your loved one about the world “out there”, teaching him /her about other people – most are good, some are bad.
- Being realistic about limitations and also abilities. Being mindful of change – change is possible. Expectations can change too.
How can we help our loved ones pursue paid or volunteer employment opportunities?
- Person Directed Planning – to find interest, skill and strengths
- Money as an incentive to volunteer.
- Co-op placement outside of school or helping with programs at school.
- Volunteering: Volunteertoronto.ca, charityvillage.ca, local newspaper, looking for community events for persons to volunteer.
- Volunteering in an area of interest.
- Start with doing chores for family members or neighbours.
- Employment: JVS, Path to Work, Agencies that help volunteer – possible job placement, job coaching where needed, ODSP –job coach where appropriate.
What does a “meaningful day” look like for your loved one?
Meaningful day- Inclusion, within the community.
- A combination of recreation, part time and volunteer work component so that the individual is giving back.
- Connecting with community – a program that helps to connect with community individually – not in groups
- Social Enterprise
- Connecting circles – autism ( Facebook)
Barriers
- Money – How to fund it. Parent should not have to support the adult throughout their life. Many individuals are very capable of contributing to society, but need support – which costs money.
- Parent vs individual goals.
Transitioning
- Person directed Planning and independent planning – getting the individuals goals/ dreams.
- Planning their own life / risks
- Independent Facilitation – to help the individual achieve their goals and make the community connections – not good for parents to do this.
- Consider physical, developmental and medical needs
- How do you get the information out to Parents – parent education
How do we balance the requirement to respect our loved one’s human rights with the attitudes honed by a lifetime’s experience as a caregiver?
- We have to be careful that when we make decisions for our child, we are thinking about the child and NOT ourselves. The result can be disastrous.
- How to get a spouse on board?
- Bring them to events like Connected Families Forum.
- Get connected.
- Get a caseworker / service co-ordinator
- Cultural parent groups
- Don’t be afraid to advocate and get support you need.
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