Know that you are not alone in this and that there are many supports for you, your spouse or partner and your children.
Parenting can be challenging at the best of times, but parenting with young onset Parkinson’s and trying to manage your own wellbeing needs can add a lot of stress, both emotionally and physically.
Strategies and support for families
Parenting with young onset Parkinson’s (YOP) presents unique challenges that require a comprehensive and individualised approach. By accessing available resources, building a strong support network, and adapting parenting strategies, individuals with YOP can navigate their journey more effectively.
It is essential to stay informed, proactive, and resilient in facing the challenges associated with YOP while maintaining a focus on the well-being of both parents and children.
Understanding your young onset Parkinson’s
It’s essential for parents with YOP to understand their condition and how their unique set of symptoms may impact their parenting roles.
Common motor symptoms include tremors, stiffness, and difficulty with balance and coordination, which can affect daily activities. Cognitive issues, fatigue and memory problems can affect scheduling abilities and attending school or doctor appointments.
It is important to know when you are ‘on’ and ‘off’, so that you can try to schedule interactions related to your child when you are at your best.
Parenting strategies and adaptations
Adapting your parenting strategies is essential to coping well. This may involve breaking tasks into smaller, manageable steps, utilising assistive technologies, and implementing routines to conserve energy (e.g. take naps with the kids).
Engaging in open communication with family members and children about the condition can foster understanding and support within the family unit.
Also let your child’s school know and having frank conversations with their teachers about your communication needs. Additional needs of your child can be supported through their wellbeing officers, or Carers Australia young carer mentors.
Support Networks and Organisations
Australia offers various support networks and organisations tailored to individuals with Parkinson’s and their families. The Parkinson’s Australia provides valuable young onset app and website resources and educational materials.
Connecting with local support groups or online communities can offer a sense of community and shared experiences. You can link to your local support groups through state-based Parkinson’s organisations.
Financial and legal considerations
Parents with YOP may face financial and legal challenges. It is important to explore available financial assistance, disability benefits, and legal support.
Seeking advice from financial planners and legal professionals can help navigate these aspects, ensuring the family’s financial stability and future planning.
Work-life balance
Balancing work and parenting with YOP can be challenging. Open communication with employers about the condition and exploring flexible work arrangements may be beneficial. Understanding your rights and accessing workplace accommodations can contribute to a more manageable work-life balance.
Mental wellbeing
Managing the emotional aspects of YOP is crucial for parents. Seeking counselling or therapy can provide emotional support and coping strategies. Prioritising self-care and maintaining a healthy lifestyle, including regular exercise and a balanced diet, can contribute to overall well-being.
Some strategies to use at home
Sleep schedules
Good sleep habits are very important for children and people with Parkinson’s. Getting 10-12 hours’ sleep with a regular bedtime and waking time.
With babies or younger children and Parkinson’s symptoms, sleep disturbances are common. Napping during the day can recharge your batteries.
Patience
You may feel overwhelmed and anxious with the busyness of life with Parkinson’s, kids, especially in relation to getting everyone ready in the morning or the dinner, bath and bedtime routines. Maybe ask your partner to do bath time while you pack the dishwasher.
Get moving and stay active as a family
Whether on your own or with your loved ones, exercise is one of the best things you can do for your body and mind. Try to exercise at the same time of day for consistency.
Get support
Try to stay well-connected with family and friends who can offer emotional support. If helpful, consider seeing a therapist or joining an online support group. Also ask for help where useful – perhaps another member of your family could help with errands.
Changing to online ordering and home delivery options. Things like grocery deliver can help save time and the stress of shopping in store. You can also set up regularly shopped item lists. Don’t’ forget about school lunch orders.
Family time
Find a fun way to interact together as a family every day. Make a healthy dinner together, take your pets on a walk, do a jigsaw puzzle, play cards, board games, or just watch some TV together.
Prepping
From meal prep and school lunches packed the night before, to pills and a drink bottle on the bedside table, there are many things you can do to make things a bit easier in your routine. Also look at pre-made meals for dinners.
Some supports to access
Discuss what you can and can’t do at certain times of day of day with your partner or support coordinator to work out how your NDIS goals and supports can fill the gaps.
Can your school community or a grandparent help with school drop offs and pickups? Can a support worker help with lunch prep and transporting kids to school?
For More Information
Parkinson‘s Australia
www.parkinsons.org.au or FREECALL 1800 644 189 to be put in contact with the Parkinson‘s organisation in your state or territory.
Be sure to include goals around your family in your National Disability Insurance Scheme application and plan. See www.ndis.gov.au for videos, factsheets, checklists and booklets.
Disability Gateway www.disabilitygateway.gov.au
