As an older mum I felt blessed when I finally was able to give birth, through the intervention of IVF, to triplet girls. It was quite an extraordinary roller coaster ride – a virtual trifecta of ups and downs and just plain busy-ness.
Nothing prepared me for the extra twist of having a child with special needs. Milestones by the book for two with the third lagging behind on everything but trying her best. It was almost a relief after years of visiting doctors to finally get a diagnosis of mild to moderate cerebral palsy with developmental delays. And then reality hits.
Getting a diagnosis is like waking up and finding yourself in a new, unfamiliar world with no clear roadmaps and very little guidance as to what needs to be done to help your child. And you, as the carer have to not lose sight of being there for the rest of your family. Very few people understand the magnitude of this journey. The exhaustion, the never ending feeling of not being able to do enough, the pain and envy of hearing about the wonderful joys of others, and living with the dichotomy of joy for two children achieving milestones with their friends, and the agony of the other child who does not and may never achieve those milestones. Taking joy in what ever success they can achieve, manufacturing them wherever possible with the constant nag of am I doing enough for my other children and husband.
Then it hits harder as they get older and the siblings are off with friends and your special needs child tries desperately to fit in between their multiple therapy sessions. Left out of parties and playdates. I was blessed with a few angels and mothers group that were truly there but how much can you burden your friends without wearing it out. Very few will experience the gut wrenching, indescribable pain when your child wails from the bottom of their soul “ why me?” and you know you are trying to do all you can but it’s not going to fix it and there’s more to come.
By the teenage years, all the girls have their challenges and friendship issues but to watch my beautiful daughter be invisible was soul destroying for her and for me.
Sometimes I naively wished my daughter was bad enough to be in a special needs school surrounded by other mums who understood and a support infrastructure that catered to special needs. I was told my daughter was too high functioning to fit in a special unit so we stumbled on in mainstream.
Isolation was taking a terrible toll on me and my family. My husband soldiered on with a wife who had had to give up her career to support their special needs child and who became overcome and overwhelmed by depression and rejection. My girls lost their happy, energetic mum who became obsessed with supporting a struggling child. It becomes a spiralling journey of rejection, isolation and depression.
By about the age of 12 the kids were off with friends, playdates and parties..not for my little special needs girl. She just struggled to fit in, was often left out, became more invisible and desolate as time went on.
I tried looking for social groups my daughter and I could connect with. If you were you autistic, wheelchair ridden, ADHD…you could join with a specialist support group who had families from all over Sydney. But being mild to moderate my child needed to find her way in mainstream. Many parents protect their children and don’t want a label due to potential stigma and rejection. The schools “protect anonymity” by not sharing who the other special needs parents are. There’s softball, netball, swimming teams….pretty much focussed on mainstream kids and if you find special needs sports often they have members who come from areas widely dispersed across Sydney.
I looked for online communities for special needs mums – there are lots and they are all over the country and the world – which doesn’t exactly help socially and there were none for kids. I can totally understand the threat of social media for kids with special needs and why parents simply don’t allow their special needs kids to use social media – which exacerbates their social isolation even further.
About three years ago I contacted a number of schools in the North Shore to ask if they had kids my daughters age who were socially isolated and of course there were. Little pockets of kids and parents like us, isolated and trying so hard to find ways to safely connect their kids with friends and activities. I contacted countless government agencies, help groups, support groups but these things are complicated. It was over the Christmas holidays two years ago when my other two kids were off with friends and their parents were in lovely little friendship groups each supporting each other I realised I had to do more than be jus one mum trying to reach out to others.
I formed M2M.org.au and the concept was to create an online (but local community) leveraging Councils and local electorates – North Shore (yes just like North Shore Mums) and Northern Beaches…and onwards. I have started to build the M2M North Shore platform. The grant is seeking extra funding to upgrade the functionality of the site. M2M is referral-based and by applying via the M2M.org.au site kids, parents and providers can be approved to join the relevant M2M North Shore Facebook Community. Over 30 schools across the North Shore are familiar with and support M2M North Shore.
With a corporate background in IT and outsourcing and consolidation of services I’ve been able to pull together a proposal which has been endorsed by a number of elected representatives and senior executives in NSW and Federal Agencies. The objective is to start small with a circle and community of trust (and create a platform with appropriate security and linkages to special services and that has cost effective, scalable and customisable infrastructure so it can be extended to other communities as rapidly as they wish to create one for their own community. Governance, security and linkages to support agencies/ organisation are centralised and local support services will have a section in the community to work with and support their local community. As a not-for-profit organisation M2M also has a strong community minded board made of people who have witnessed the impacts of special needs on a family and/or have been directly affected by special needs.
What is M2M North Shore?
M2M North Shore is forum for kids with special needs, their parents (carers) and providers to support each other. It is referral-based (teachers, doctors, counsellors, support personnel and other parent members) to allow the parents to connect (in a separate but linked forum), kids to engage on line and ultimately to allow parents to network and organise parent funded and supervised activities. Many children are isolated in their mainstream communities and their carers suffer the same isolation and depression.
There are over 20,000 students in the north shore and approximately 10% (2,000) have special needs. Many children (and their parents/carers) suffer from social isolation and depression. M2M provides a safe environment to reach out and connect with others who are challenged by similar issues in your local area. It is community-based and not limited to a specific disability. Over 30 schools have expressed their support of the initiative.
M2M North Shore is already live. It has a web page used for public information and the on line forum which currently resides on FB. The forum is referral-based (teachers, doctors, counsellors, support personnel and other parent members) to allow the parents to connect (in a separate but linked forum), kids to engage on line and ultimately to allow parents to network, share information and organise parent-funded and supervised activities.
My Community Project
It was after a meeting with our local member, Alister Henskens that I was directed to the recently announced NSW Government program called my Community Project. My Community Project funds projects in each NSW electorate to help improve the wellbeing of people and communities. Successful projects will be determined through a public vote and the projects that receive the most support will receive funding. Up to $260,000 is available for each electorate. My Community Project is made possible by the NSW Generations Fund. The voting started on 15 July and runs through to 15 August.
To submit an application I needed to be sponsored by a local, reputable organisation. I presented my application to Turramurra Rotary Board and they kindly agreed to sponsor M2M for the grant submission. Turramurra Rotary have subsequently been incredibly supportive and helpful regarding this initiative. In there view there are so many people touched by challenges associated with disabilities and this seems such a practical way to help people get in touch and support each other on a local basis.
Why should you vote for this project?
Social isolation is the #1 issue facing people with special needs. M2M North Shore helps special-needs parents and kids connect. M2M is led and managed by parents, who will self-fund and supervise their children’s activities. It is referral-based for security. M2M has been designed with a platform that is scalable and secure so it can be extended to other communities.
It won’t cost you anything and you will be helping thousands of people in the community.