Professional sporting and Paralympics

Today we discussed what modified and accessible sports are available to families who might be feeling motivated after watching the Paralympics.

If your child has an interest and enjoys or has friends already playing a sport they want to play with, then you can start there. Do they like throwing a ball, bouncing a ball, kicking a ball, swimming? There will be an adapted version of the sport for them or your team can help you make adaptations to suit your child, you can then include building skills for this sport into therapy sessions if your child wishes to.

What is the perfect balance of therapy and school?

On today's podcast Dayna and I discuss what the ideal balance could look like once your child starts school or daycare.

Being told it was time to slow down on therapy and let our child be a child was an important permission I needed to alleviate the parental guilt associated with reducing the therapy schedule, changing the therapist’s role and knowing there was research behind the advice was so important to us.

Starting school presented the same challenges as after school therapy sessions just weren't working for us. I share how we needed to take a different approach and how we utilised our incredible therapy team to support our child at school which has worked really well for our situation and our school.

We hope you find this informative and helpful, if you have any questions or feedback on this topic or any other topics please let us know, we love hearing from you!

info@healthystridesfoundation.com

This was another really important topic we discussed today as it's a question we get a lot in the clinic and that is about sending a child with a neurodisability to daycare.

There are many reasons a family will send a child to daycare, so the parents can work or get some respite or it may be to socialise their child. Dayna and I discuss the benefits and importance in some circumstances of sending a child with a neurodisability to daycare and how to find the right daycare for your family.

The biggest advantage to children attending daycare is the social connections, learning to play, taking turns, being around children of the same age, play with children of the same age is integral to a child's development. Daycare's are a great facilitator for play and general development on all levels.

We discuss how beneficial our family found daycare for my child, what challenges we faced when it came to getting our child into daycare and how we knew it was the right place for our family.

-- Kate --

When to present to ED (or call an ambulance)

A lot of the time it can be very clear when you need to call an ambulance or present to ED such as for seizures, breathing issues, and severe illness but there is also a lot of gray area with some of our children and i know a lot of us do our best to avoid the “bugs” in hospital’s and unnecessary medical trauma.

Some tips and tricks we share for ED visits or ambulance trips are

• Always carry a recent hospital discharge or paperwork you have put together with your child's and family's details, medical history and recent medications, this can help the Paramedics and Doctors in an emergency allowing you to attend to your child.
• If relevant it's important to note any changes in the child's environment such as new support workers, EA’s at school, new bruising, new habits, loss of function etc.
• Always have an up to date height and weight this can be important for many reasons including if immediate medication is required in the ambulance.
• Back yourself, be confident in expressing your concerns and remember you know your child best and you are the expert on your child. If you noticed it, it's important!

Finally we discuss that the cost of calling an ambulance can be high so if you do have a child with a neurodisability or complex health needs, I do recommend looking into the ambulance cover available to you in your area such as through private health insurance, the ambulance provider, or the government.

This is something you can also discuss with a social worker at the hospital. Eliminating the cost stress associated with calling an ambulance can be really important when prioritising your child's health and safety.

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.

This week we discuss all things self-regulation and behaviour management.