Celebrating Small Victories: Positive Moments with Children with Joint Hypermobility and Low Muscle Tone

A Guide by a Mum Who Has Been There

 

 

You will know from my previous blog that I am a proud mum to two wonderful boys, one of whom has joint hypermobility.   Shortly after I found out my younger son had joint hypermobility, I was told by his paediatric physiotherapist that he also had low muscle tone.  As most parents would, I researched low muscle tone, desperately trying to find out more.  I read so much about the challenges that children can face, but I found nothing about the accomplishments that I would be celebrating and the moments of joy I would be experiencing when he was able to overcome these challenges. 

 

There have been many small victories that we have celebrating, and I know there are so many more to come.  

 

Low muscle tone is also known as hypotonia, and is often found in children with joint hypermobility, as well as other conditions. 

 

Children with low muscle tone generally have muscles that appear floppier than other children their age, which means that it may take them a little longer to move their muscles when engaging in day-to-day activities, causing development delays.  With the right support, however, you will most certainly be celebrating your child’s achievements. 

 

Here are some examples of delays and challenges my son experienced due to his low muscle tone and joint hypermobility, and of his wonderful achievements:

 

  1. Sitting: He did not sit independently until he was around 9 months old. This may well have been later than his peers, but he got there with some assistance.  Definitely something to celebrate! 
  1. Standing: At around 12 months old, we realised that my son was struggling to stand, even when he held him. It was clear that his muscles were not strong enough to support his weight.  His physiotherapist recommended some exercises, gave him some ankle supporting shoes and advised that he wore gaiters for at least 10 minutes per day.  He was slowly able to stand straight and then started cruising while holding onto furniture.  A huge challenge that he had overcome!
  1. Crawling: Despite lots of tummy time (which he did not like!), he has never crawled. He started to bottom shuffle instead, which is common in many children with joint hypermobility and low muscle tone.   I could see that bottom shuffling was strengthening his muscles and more importantly, was helping him move around and become more independent.  I could see how happy his new mode of independence made him.  Yet another achievement to celebrate!
  1. Walking: He was able to walk holding someone’s hand for quite some time, but I was always extremely concerned that he was not walking independently. We regularly carried out all exercises recommended by his physiotherapist and he started walking independently at around 27 months.  He is now almost running and we can’t stop celebrating this huge accomplishment!
  1. Bending: Despite being able to walk, he found bending difficult. With lots of practice, always making it as fun as possible, he was soon (shortly after he turned 3) able to bend without holding onto anything.  Another proud achievement!
  1. Speech: Something I was not told by medical professionals was that low muscle tone affects a child’s speech. The muscles around and inside the mouth often do not have sufficient strength to perform the movements necessary to speak, causing speech delay.   Speech therapy has helped my son hugely; his communication skills have improved greatly and he is making lots of wonderful sounds – we are sure that we have heard some words too!  Another reason to celebrate!

It is so important to remember that whilst it can feel like a long and difficult journey when children do not meet milestones, there will be so many achievements that you will be celebrating once your child has the right support.

 

Keep going and keep celebrating those victories, whether big or small!  

 

 

I am not a medical professional and am not providing medical advice in this blog.  This blog sets out my experiences and opinions as a mother and should not be taken as or substituted for medical advice.  Always speak to a medical professional in respect of any concerns you might have with regard to a medical condition.