Working with children with complex needs
Where do you start when, as a parent, you’re worried about your child?
Navigating the different developmental services and health professionals can seem confusing and, at times, overwhelming.
What do you do when you have made a start, but have assessments and reports and opinions about therapy and management and don’t know what to do next?
Navigating health and educational services can remain confusing even when you’ve made a start. It feels like learning a new language as you hear of terms and diagnoses and have to upskill in implementing therapies with your child. You also need to become knowledgeable enough so you can share the news with others, including family, teachers, carers and other medical professionals.
What do you do when you’ve been in the loop for a while but don’t feel like your child is making the progress you expected or things may even be getting more difficult despite your efforts?
Navigating the ‘what does this mean?’ and ‘where to now?’ can be a daunting and often frightening place to be as a parent.
So what do I do?
Part of my approach to diagnosis and treatment is to help parents to feel more organised and able to work through the process. It can help just to feel as though there is plan or framework – you can understand your child better and what we’re going to do to address your main concerns. This includes helping you to understand:
- what is going on for your child – why are they having the difficulties they are having now?
- their strengths as well as their weaknesses
- what resources you need to support your child both long- and short-term
- the people you need in your child’s support team
- my recommendations for a coordinated approach across people and environments, with everyone working to clear goals.
With understanding and through careful planning and collaboration, it is possible to make a significant difference in your child’s life, and your family’s life too. It also avoids spending lots of time, money and energy on therapies and education plans that are not right for your child or complementary to each other.
Supporting you as parents is of critical importance. There are skills you need to have as parents to be able to best support your child:
- What are the key concepts I need to understand about my child (making sense of the jargon)?
- How do I know what therapy I should be doing?
- What specific skills is the therapist teaching my child (or me or their educational team) and knowing what questions to ask of your therapists or school?
- When do I delegate therapy and step back and just be ‘parents’ and not ‘therapy parents’?
- How can I advocate for my child and feel confident in what support to expect?
- How can we support each other as parents (your child’s most important team)?
- How can I set up therapy when I have two or more children with developmental needs, and not get burnt out?
- How can I learn to acknowledge the emotional space it can sometimes take, and that my emotional experiences may not be those of ‘normal’ parents; and accept that’s okay?
- What is the supporting the role of dads as well as mothers – it takes a team?
Every child with extra needs benefits from having a team of support. However, that team needs one person who has the big picture in mind. That person could be me, as your developmental paediatrician, or someone else you feel confident has the skills to navigate the challenges and the transitions with you.