I think that sharing stories helps with our shared understanding of our neurodivergent world and makes us aware that we are not alone out there. With this in mind, here is our story of 2021, a year when our world changed a little.
We have a child who has Dyspraxia and ADHD. Our journey with our son over the past few years especially, has been interesting and amazing. We do though, see some areas that we think we, as well as similar families, have really struggled to navigate. With some of our wider family experiencing neuro diversity, we had a bit of an early hand in understanding the signs and impacts of having a neuro diverse child. For several years though, while we knew he was a bit different to his siblings, we couldn’t quite put our finger on what that really looked like, until a great teacher at his school suggested he might have Dyspraxia. How this laid out was:
The teacher didn’t know what to do next, other than to say “you should get him assessed”. She had no information to give us, no one to turn to herself. She just had a gut feel and knew it was right to raise it to us and set us on our journey. We asked the SENCO at the school, but unfortunately she didn’t know what Dyspraxia was at the time and said that the school of 200 + had never seen a Dyspraxic child (the percentages would suggest that there would have been at least 6-10 at the school at that time alone) and when we talked to her about what we had found during our own Googling, she didn’t then know where to go to get further help. It wasn’t that she didn’t want to help, there just wasn’t a healthy framework for her to call upon to help us and the school get the proper help in place.
We finally found a Facebook group for Dyspraxia and contacted the person running that group, who was in Christchurch. She had worked through an Occupational Therapist (OT) who specialised in diagnosis (seems to maybe one of a handful in the country, if that), and that OT had just moved to Auckland, we were very lucky to have this line up for us to be able to get a diagnosis.
We then spent the last couple of years navigating this world, trying to educate ourselves, trying to bridge the gap between ensuring he receives good support at school and then co-ordinating support at home. This was a challenge with such limited support structures that offer help to families to understand their child, help them to understand how to help their children and ensure there is consistency in their world, which is usually a key need for them.
An example of the challenges that we faced came with his 2021 year at school where he was put in a class with a teacher that asked to have “children with complications”. Her way of supporting our son was to put him in a group with 4 children who had Dyslexia (a quite different type of neuro diversity from what he has) and get them to study together in the storeroom next to their actual class. This seemed potentially good to us in some ways as they got extra time to work on things together, but their learning styles were quite different so they weren’t able to really support each other.
When we got going through the year, we had things escalate as the support changed at the school, we were left having to navigate systems that aren’t set up to help in situations like ours. During this time, our son:
- Got abused at school leaving significant bruising about half a dozen times
- Smashed his head with a hammer at home
- Tried to burn down our house
- Smashed his arm through a window at home, getting stitches
- Tried to chop down the house with a hacksaw (these home ones happened just after the school incidents)
The SENCO at the school referred us to Marinoto (child mental health unit on the Auckland North Shore), she didn’t have another alternative that she knew of. Marinoto would not accept our son because he has Dyspraxia which apparently rules him out in their framework, no matter if an issue is actually related to the Dyspraxia or not (he immediately didn’t qualify for any support). We were now in a weird position where we would have had much better support if he wasn’t diagnosed and put into a category, instead no matter what happens to him during childhood and what other mental health issues he might have, Marinoto and other public services will refuse to look at him.
We were left wondering what we were going to do.
Marinoto did suggest maybe trying Family Works to see if they might be able to do something. Family Works said this was certainly a Marinoto issue, but because they had turned us away, they turned us over to Oranga Tamariki. Oranga Tamariki were forced to investigate us as clearly something was occurring and it was now logged in their books, but of course cleared us (they said that we would be the first family to be so proactively keen to get help and be abusing him at the same time) and said it should be with Marinoto, but referred us to the wonderful team at Strengthening Families.
This is where things started to change, we had found someone who was willing to listen and help.
We ended up having a wonderful social worker from Barnardos (through being connected through the team at Strengthening Families) who has then been so invaluable in our journey in 2021, a great social worker is an incredible support.
At NeuroPower we are hoping to help be some of the connective tissue that gets things joining together for you and your family