Parenting children with complex special needs: what parents want clinicians to know
Danielle Williams, a special needs mum to 2 complex girls with a rare genetic condition called SYNGAP, shares her thoughts on what parents with special needs children want clinicians to know when it comes to therapy sessions and communicating with parents and families.
It wasn’t and still isn’t an easy road for Danielle and her husband with both of their girls having SYNGAP with symptoms and behaviours such as autistic-like traits, high pain thresholds, impulsiveness, no fear factor, behavioural issues, and being non-verbal. There is no treatment or cure for the condition but finally having the diagnosis years later was a turning point for them.
They are now very closely connected to individuals and families all over the globe who have the same symptoms their girls have. They have set up fundraising efforts through Syngap Research where they have partnered with the Epilepsy Foundation. They also co-founded a group called SYNGAP Global Network with people from all over the world who are advocates in their own countries.
Over the course of years and years of therapy, here are some things that Danielle wishes health professionals knew from the perspective of parents of special needs children:
- Be honest and intuitive.
In the early years, no one told them that there was something wrong with their child or that they were not going to be normal. No one dared to tell her the truth until she met one person that said it to her which she felt so grateful about.
When you have a child with complex needs, you don’t know if you’re going out of proportion, if they’re in the trajectory of not being normal or atypical, or whether it’s just a blip and they’ll be back to normal.
Not every parent is ready to hear it but maybe feel it out if the parent is looking for that kind of news.
- Involve the whole family.
Allied health professionals generally don’t involve dads, grandparents, uncles, aunts, cousins and siblings. They don’t do it well yet but they need to. Therapies should be more family oriented as opposed to patient-specific therapy.
- Involve the family in speech therapy sessions (as well as other types of therapy).
What struck Danielle with speech therapy specifically is that if they didn’t embrace the technology, as the family members and carers, it’s not going to work. She realised that they probably needed speech therapy sessions also to get into the habit of using these new devices and languages.
- Summarising session notes that are given to parents and families.
Notes are useful but with so much data, it’s hard to consolidate and pick out the main topics of the session. One solution she suggests would be to highlight 3 things they’re doing well and 3 things the family needs to work on.
- Using applications / softwares that can help with communication between the families and the therapists.
Another suggestion would be to set up a Slack workspace for each child with specific channels for each therapy. This could be a great solution to communication between therapists and families. The problem with this is that everyone in the workspace needs to be invested for it to work.
Methods / frameworks can be uploaded to slack instead of sending it via email because emails tend to be overcrowded nowadays.
Sameview is one such platform that brings a team together to discuss goals, progress and communication.
- Be considerate of everything else that might be going on in this family’s life.
There’s so many things that may be going on. Be empathetic and compassionate to the patient or child and try to relate to what the parents might be feeling because that’s tough as a parent not being able to fix your kid or to know what’s wrong. That’s particularly tough emotionally.
- Be open, flexible and adaptable especially to complex cases.
- Support and guide your patients through the NDIS
- Make it easier for parents to engage.
Parents have a lot going on. Tell them things in a simple, direct, and easily digestible format.