How do you find the right ‘support group’ as a parent of a high and complex needs child?

Over the years while raising Mitchell and Holly I have joined several parent support groups, but for one reason or another, never managed a true sense of belonging. Here is a summary of a few of the groups I have participated in and how I found my home at the complex care group.

During Mitchell’s baby and toddler years I had joined two North American groups for support:

  • Mothers of Omphaloceles – known as the MOOs. (This is now an active facebook group with over 3,600 members)
  • www.trachestomy.com.

These two forum groups were for parents and carers of children who had Omphaloceles and Tracheostomy’s respectively. As an active member in both of these forums while Mitchell lived in hospital from 2003-2006, I gained and shared a lot of knowledge. However, once we went home my interest and the differences in homecare systems and funding between the US and here in New Zealand, made for different discussions, and although I still found it useful, I grew away from the type of talk going on. At the same time, we started to have different challenges relating to behaviour and autism on top of the medical ones.

This started me looking at local groups and I came across, parent to parent. This is an organisation designed to connect parents with similar circumstances and perhaps a parent who has been on the path a little longer will help or advise a newer parent into their role of raising a special needs child – or perhaps it is just a connection that helps you realise you are not the only parent experiencing the journey you are on. I was introduced to another parent but as Mitchell’s diagnosis of Pentalogy of Cantrell was so unique here in NZ, we were unable to find another family who had a child with the same condition. Once again, my interest waned as I was not able to find the type of support I was seeking.

When Mitchell started kindy, I dreamed of finding a ‘real life’ buddy, a true connection with another mother, but I found that most Mum’s dropped their child off and just returned at the end of the session. As Mitch had a tracheostomy, and was still on oxygen, I needed to be on hand for emergencies, so mostly I was busy making sure he was doing okay, which didn’t leave me with the opportunity for small talk . Lucky for me I did meet and make one wonderful friend there, a fantastic kindred spirit, who had a son the same age as Mitchell but a daughter with an undiagnosed condition who was a little older. She made the effort to introduce herself and I am forever grateful for that. Our children went to different schools, and we moved further away, so we don’t see each other much these days, but we remain friends.

By the time Mitchell was diagnosed with Autism Spectrum Disorder, he had been at school for two years. I googled a lot about autism but never really found a group supporting parents of children with autism that balanced the extra needs Mitchell had, with his other needs. While Mitch was non-verbal we still were not entirely confident whether this was trache related or a result of his autism wiring. I also discovered that in New Zealand, there were multiple ‘organisations’ supporting autism. Those that seem to be the most visible:

Over the years we (myself, carers and Phil) have attended training and education events run by both these organisations, and both have been professional and very worthwhile for me personally. While they do offer ‘support’, as a parent of a complex child the timing of events on offer are not always convenient, and for this reason I am not able to make full use of their offerings. As Mitchell has reached adolescence I find them to be less useful now as the intervention programmes are largely aimed at early intervention, and the teenage programmes do not meet the needs of a complex, non-verbal teen (in my opinion). There is also, the US based organisation – http://www.autismspeaks.org but from NZ this appears very US advocacy focused and while informative has less relevance here.

When the twins arrived in 2003, facebook and social media did not exist. Ten years later and facebook groups had overtaken the forums that were around in the early 2000s. About this time I joined the Facebook NZ/Aus Trache Group that was started by long term Trache Mum, Shona Gower. It was, and still is home to Mums/Carers of Trache children living in New Zealand and Australia. With over 100 members now, it is a good resource for local information and protocols on trache cares and issues. Even though Mitchell has now been decannulated I still follow the group discussions. The link for this private members only group is here: https://www.facebook.com/groups/596088047079580/

Not long after joining this group I found the facebook Pentalogy of Cantrell (POC) group, which had been started by one of the Moms (Sarah) from the MOOs site. As children with POC all have omphaloceles, I had talked to Sarah online there, and once she started a more specific group and opened it globally, I was happy to join. It’s great to finally find other parents with children diagnosed with this rare disorder. However, due to the rarity and survival rate the member numbers are low and the discussion is very spasmodic, and as one of the longer members of the site, I have now witnessed both successes and devastating losses. Here is the link to this group: https://www.facebook.com/groups/160565434139813/

Other types of support group I have found useful are those relating to funding and/or caregiving of our children. Currently, I am a member of two groups of this nature on facebook:

My experience of both of these groups as they are very useful if you want to keep up to date about what is happening with caregiving and funding from a political perspective. They are also a great source of information on how to get the most out of your funding, or to chat about common difficulties in sourcing adequate help, caregivers and resources. While you may not solve your problems online, you can almost guarantee someone else has experienced something similar when dealing with the ‘system’ and are happy to offer advice. Both these groups are administered/moderated by Franky Lewis who has done a great job in setting these up and keeping them current.

A couple of years ago I joined an online group called the Complex Care Group. I stumbled upon this group late one night while online, (undoubtedly while searching for answers about something) and was surprised and pleased to see that such an organisation existed here in New Zealand for the parents of high and complex needs children. I must say that this group has felt like a little bit of home to me – the organisation has a website https://www.complexcaregroup.org.nz/ and is officially recognised by government as an advocacy group for our particularly unique community.

The research and need for this group was established in the early 2000s with a pilot study and Jan Moss was instrumental in getting this going. The group was registered as a company in 2012, and received charitable status in 2013. Today, this would be my ‘go to’ support centre, as it is the one I identify with the most.

So, how do you find the right support group as a parent of a high and complex needs child?

In my case, I was never going to find one support place where Mums talked about pentalogy of cantrell, tracheostomies, vent dependency, oxygen needs, non-verbal autism, pulmonary hypertension, naso-gastric feeding and raising twins. For a long time, this left me feeling very isolated and frustrated that I could not find another ‘soulmate’ type friend that was in the same situation. Really what planet was I living on? It was really only after I discovered the complex care group that I realised that our children don’t need the same diagnoses for us to have the same goals, but because our children all have high and complex needs, we share the same needs for support and action. So, belonging to this group currently meets my needs, and I hope that I can also make a difference to other parents in this group who are starting out.

For some parents, like Shona Gower, Franky Lewis and Jan Moss, it has meant starting a group themselves. For me, while I have wanted to be a trailblazer and start a group as these women have, I always felt that our own situation was too narrow to find my own tribe. So my solution has been to join those groups that have matched my situation at the time, and I have been able to both learn from others and share my own knowledge for those who are just starting this journey. Or perhaps your child has a specific diagnosis so you can find the support you are looking for in a group that specialises in that disorder – there are many, many organisations out there once you start looking! Or you can belong to a range of support groups that deal with specific issues you are facing – difficult behaviour, feeding, speech, caregivers, funding, hospital stays, how to look after yourself etc. All of these options can work to help you receive some of the essential support needed as a mum of a complex child.

One last thought. By looking at what you have in common (rather than what you don’t) and sharing your own stories, I believe you will find those all important connections we so desperately need.


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