Being a parent is full of unexpected challenges. This month, Amy reflects on how a recent health obstacle with one of her sons allowed her to appreciate her own tribe of support.
Much of my month this month has been spent in hospital or at appointments with one of my twins, Liam after the appearance of some new health issues.
He is doing ok, and we are adjusting to some new interventions however it really reminded me how important our support systems are, both formal (paid supports, medical teams etc) and informal (family and friends).
We were very fortunate to have our family, friends and the boys' team of support workers rally around us while Liam was in hospital, with me staying with him much of the time. From relieving me at the hospital and playing with Liam, visits and presents, cooking meals and a lot of help at home with my other children, all were extremely appreciated. When my twins were born early and in hospital for three or four months, I initially found it hard to accept support. I still do to an extent, however, have gotten much better at reaching out and asking for the support my family and I need at these times.
A vital support system I have had over this time also is the support network of other mums (and dads) with children who have cerebral palsy and other disabilities. Speaking to someone who has been through the same thing or similar is valuable. It can take a while to find this Tribe however when you do it can be a wonderful support system.
For most first-time mums, you are thrown into a group of random others based on your location and child’s date of birth, a ‘mothers' group.’ This group can be great, but it doesn’t consider how you became a mum, your birth experience, your child’s health status or any other individual experience that has come with being a mother. Don’t get me wrong, these groups can be a wonderful source of support however for some, through no fault of well-meaning others, they can be quite alienating when you realise your experience and experiences to come are very different.
When you become a mother of a child with a disability, no such automatic ‘support group’ exists. Instead, most parents like me spend much of their journey before and after diagnosis without this important support system. Looking back, I remember the first times I met other parents of children with CP or similar disabilities. I remember one such experience where the sense of finding a tribe was such a relief and something I knew I had been searching for and needing for some time.
Finding your support system is vital to any parenting but especially so for children with additional or complex needs. Sharing experiences with other parents or carers not only provides a space to share stories, tips and tricks and words of support but provides a space for celebration - celebration of the milestones that go unnoticed by many but are worked so very hard for by our children!
Here are some tips I have found useful along my journey, when it comes to formal and informal support and in finding that ‘tribe’-
Accept and ask for help when you need it. It is often easier to ask our formal supports i.e., support workers to do additional shifts, however reaching out to family and friends can be hard. I have learnt along the way that family and friends genuinely want to help and often get as much pleasure in being able to help as we do appreciation in receiving it.
Being asked ‘Let me know if I can help’ or ‘What can I do to help’ can be really overwhelming I have found. I have always found it a bit easier if the person offering just cooks a meal or offers to spend some time with one of the boys; however in times where you really do need help have a think about what you really need, and learn to feel okay with gently suggesting what might help (e.g. a cooked meal or a playdate). Again, people get as much value in providing help as we do in receiving it.
When searching for support from other parents or carers with children or adult dependants, it can be difficult to know where to start. Joining a disability related support network such as CPSN is greatly beneficial as is taking up any opportunities they that they provide such as online groups, virtual or in-person catch-ups, publications, and other resources.
Many of the specialist schools run playgroups for children with disabilities. Looking online can help you locate these.
Therapy centres can sometimes result in you ‘running into’ the same parents regularly, and striking up a conversation with other parents can have surprising results. Therapy groups are also a wonderful way to get to know parents - I met many of the parents I am still connected with and get great support from at a therapy group that my boys attended several years ago.
Attend events like Source Kids and other disability expos. You never know what resources or supports you might find there. They are also heaps of fun!
Want to learn more about how you can create your own tribe? Why not come to Source Kids Disability Expo, July 7 – 8, 2023. Call 9478 1001 to learn more.
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