How to troubleshoot when something is wrong with a non verbal child.

It can be so distressing for everyone involved when something is wrong with your child and they can't tell you what, it's really hard to know where to start sometimes, when to take action and who can help.

A lot of families have to rely on intuition and sometimes this intuition won't always match a typical clinical presentation for that concern.

If your child is very distressed, crying differently and unable to settle it's important to seek medical attention quickly. It's important to know that your intuition in these situations is the evidence so don't be afraid to communicate what you are thinking and feeling could be going on.

If you have time, it is important to note some things down to share with the health professionals you are seeing. These include:

• Diagnosis and classifications that come with that.
• Recent height and weight - recent growth spurt, lack of growth, fast weight gain or weight loss can all be important indicators to share.
• Recent eating, drinking and sleeping habits.
• Have videos of your child on a good day to help show what you are explaining.
• Any videos you may have taken if it's been a longer decline such as a change in communication, mobility, tone or just generally in your child's personality.
• Any recent changes in medications.

It is important, where possible, to start labeling things in play on dolls or when your child falls, has bumps or is feeling unwell and teach a communication style your child responds to that can help them when things are wrong to communicate to you.

It's important to know that therapists and health professionals want you to speak up when you think something may be wrong, no matter how small. They want your parental input, even in therapy sessions where you think the therapist may know your child well. It's important you stop a session if you think something is too much, not working or uncomfortable. I know I have been guilty of leaving it thinking the therapist knows best but Dayna makes it clear they are needing your input.

The important final takeout from today's podcast is to remember we do not want to push our children through therapy if they are crying. If a child is distressed and crying they are not taking in anything and there is no advantage to continuing.

This has been a common question and topic not only within the neurodisability community but also the families and carers of neurotypical children.
What is too much screen time and when is screen time a bad thing?

The research covered in this article is available here: Mallawaarachchi S, Burley J, Mavilidi M, et al. Early Childhood Screen Use Contexts and Cognitive and Psychosocial Outcomes: A Systematic Review and Meta-analysis. JAMA Pediatr. Published online August 05, 2024. doi:10.1001/jamapediatrics.2024.2620

GMFCS - When to expect a GMFCS score and can this change over time?

As parents and carers of children with neurodisabilities we can't help but hyperfocus on the few bits of information we can get when our children are young that give us insight into our children's future.

The Gross Motor Function Classification System (GMFCS) is one of those tools available that indicates how a person functions everyday and gives an idea of what equipment or mobility aids a child may need in the future such as crutches, a walker or a wheelchair to get around.

Due to comorbidities that can come with neurodisabilities, the GMFCS level may appear to fluctuate at times depending on how they are affected by things such as seizures, sensory preferences, respiratory issues and this can change the level of monitoring for things like hip surveillance in our case. Whilst our son’s GMFCS level changed in a report, within the context of hip surveillance, it just meant more monitoring and this was a good thing for us.

You should expect a GMFCS rating around 2 years of age and if the rating was to change it would be likely to happen before the age of 5. If you do not agree with the score allocated to your child, you can ask for a therapist to redo it and complete the questions with the clinician completing the assessment.