One Year On: Gross Motor Skills Update

So much has happened since I re-started this blog. Today I will give an update on Asa’s physical development (gross motor skills) since last summer. October is Down’s syndrome awareness month so let me explain why Jon and I celebrate every seemingly small milestone Asa reaches. People with Down’s syndrome often have low muscle tone (hypotonia) and loose joints (hypermobility), particularly in babies and children, which makes gross motor skills like sitting, crawling, kneeling, standing and walking much harder for them to achieve.

In October 2013, I came across kinesio taping on a Down’s syndrome blog. I had not heard of this before. Here’s a definition: “The Kinesio Taping Method is designed to facilitate the body’s natural healing process while allowing support and stability to muscles and joints without restricting the body’s range of motion. It is used to successfully treat a variety of orthopaedic, neuromuscular, neurological and medical conditions.” (Taken from this site: http://www.kinesiotaping.com/about)

Kinesio taping is fairly common in America but no so much here in the UK. I located a practitioner in Cardiff who was able to tape Asa’s core muscles and show me how to do it at home. Unfortunately, taping infants is still very new to the UK and I could not find an NHS practitioner in our area.

Within a month of Asa being taped five days a week, in November 2013, Asa started being able to sit by himself. He couldn’t get himself in to the sitting position but after what felt like ages, he finally seemed to have the balance and coordination to remain in the sitting position. Happy days! Another developmental milestone ticked off!

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Asa finally sitting with no support!

December (2013) rolled around and Asa started commando crawling! Initially only one little movement a couple of inches along. It soon developed in to a quicker move. His left arm used to get stuck under his tummy and he would get frustrated. He soon improved. Almost a year on from that and he is quite possibly the fastest commando crawler in all of the UK, maybe the world! Everyone who sees him comments, “Isn’t he fast?” It still makes me smile to see him on the move, even if that means the destruction of personal property! J He has yet to master the tradition ‘four point’ crawling but has done it a handful of times. We just think he prefers the commando style as he’s now perfected it! I don’t seem to have many photos of Asa’s famous commando crawl, probably because he’s like a whippet!!! :-)

As Asa gradually got stronger, a few months ago he learned how to get in to the sitting position by himself, and back down again. He has had a standing frame from the NHS physiotherapist which we are supposed to strap Asa in to for ten minutes each day as a minimum and build it up. In reality, this was impractical as some days we were out of the house all day, or Asa needed his nap, or I had to prepare meals and so on. Over the summer, time at home was limited in dry weather as we all preferred to be outside, making the most of the Great British summer!

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Asa needs supportive boots to help him stand and help his ankle stay straight. Asa’s hypotonia and hypermobility extends even to his feet! Most children with DS will need supportive shoes.

For a long time, there didn’t seem to be any major developments in Asa’s life. He seemed very content ‘beetling’ along as my mum would say. For many months, there was nothing new to report. No language development, no gross or fine motor skills. I was starting to get a bit disheartened and prayed a lot for him to reach a few more milestones. We decided to try Asa again with kinesio taping, this time to help his leg muscles. We also bought a physiotherapy roll for Asa to climb over as he took a liking to the kineso taping practitioner’s roll! 

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Asa loved – and still loves! – climbing over this roll!
As you can see from the next photo, he soon worked out how to climb over it in the fastest time! Apologies for the blur but this is Asa in action…

20140619_101109In September this year, Asa started kneeling up – his physiotherapist calls it high kneeling. We have monthly physio sessions and kneeling had been something we have been working on for several months over the spring and summer this year, along with standing using his standing frame. I used to put him up against his now-too-small standing activity table in a high kneeling position, and sort-of wedge him between my thighs! (God gave me chunky thighs for this very reason!!!). This must have paid off as he started doing it by himself! Definitely a proud mummy moment (and daddy of course!). He soon realised that by kneeling he could reach things previously unobtainable to him – remote controls, TV speakers, magazines and books on the bookcases, tablecloth… I think you get the idea.

We are now in October 2014. Asa does not stop. He is on the go from morning till night, and quite possibly through the night! It is very fitting that it is Down’s syndrome awareness month and that I have re-started our blog because we have some big news – Asa is now able to stand! WOOOHOOOOO! He does it every day in his cot and he loves throwing his soft toys out of it. He has stood up a handful of times in the living room. Mostly he prefers high kneeling to get something he wants and if he still can’t get / reach something, he usually gives up!

Here are some photos of our increasingly strong little lad:

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Asa’s First Physiotherapy Session

Today Asa had his first physiotherapy session at Llandough Hospital Children’s Centre. One of the most common characteristics of Down’s syndrome is hypotonia, or low muscle tone. This is why some babies with DS are ‘floppy’ at birth and in to their first few months. Low muscle tone doesn’t mean the muscles are necessarily weak, just that they are a bit more relaxed than they should be!

Clare, Asa’s special needs health visitor, put an automatic referral in for physio for him when she first came out to see us. I think most children with DS get an automatic referral to physio. Low muscle tone generally makes it harder for our little one’s to achieve some of the typical milestones in a child’s life, such as holding their head up steady, rolling over, sitting, crawling, standing and walking. It can affect any muscle and all muscles. You can even have low muscle tone in and around your mouth affecting speech, tongue protrusion and swallowing. The doctor has said this is probably the reason for Asa’s severe reflux. However with early support from trained professionals such as physiotherapists and speech and language therapists will give Asa the help he needs to reach these developmental milestones, and he will reach them – just in his own time.

This morning’s session went well. The physio has said that Asa’s tone is average for a child with DS, so it’s not great, but it’s not the worst she’s seen. She has told us that Asa has ‘very low’ muscle tone in his legs, which we already knew… Don’t worry Asa, we’ll work on that!!! We have been given some exercises to do with Asa, such as putting him on his side to play with a toy, bringing his hands to his feet and lots of tummy time, essential for all babies, but more so for babies with DS!

We are looking forward to working with our physiotherapist to help Asa’s muscles develop more strength, tone and coordination. If you ask Emelia why we go to physio for Asa, she’s tell you its because it will help Asa get stronger. She is such a bright little girl for a two and a half year old!

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Prayer points for our Christian friends:

– Pray for Asa’s muscles in general…

– Pray for the muscles in Asa’s abdomen, that he would be able to soon roll over and sit up

– Pray for the muscles in Asa’s legs and feet, that Asa would be able to crawl, walk and run well

– Pray for the muscles in Asa’s arms and hands, that he would soon be able to hold a toy and start reaching out for items in front of him

– Pray for the muscles in and around Asa’s mouth, that he would be able to develop effective communication and would soon start to make the usual baby babble noises

– Pray for the stomach muscles, that Asa’s reflux would soon disappear completely without medication – for God’s healing.

Thank you to every one of you who have prayed for Asa and our family. We’re really grateful.

Lizz & Jon x

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My handsome husband and beautiful children on a recent family trip to the Little Blue Deli in High Street, Barry. The LBD is a wonderful little place full of charm, good food and friendly staff. If you’re ever in this area, it’s well worth a visit. The American breakfast is simply wonderful…. Mmmm!

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Emelia’s favourite activity that night? Launching herself off the bottom step!