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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Baby Babble At Last!

TODAY, ASA STARTED BABBLING!!!

Unexpected.

Out of the blue.

Emotional.

Over the moon.

I didn’t realise how much I had been longing to hear those first few proper sounds come out of his small mouth. We were at the Harvester for Emelia’s birthday meal, and Asa just started babbling! He made a range of sounds, including ‘b(uh)’, ‘d(uh)’, da’ and even ‘m(uh)’, repeating them often.

I cried. I squealed with delight. I know this may seem a strange reaction for you, the readers of this blog. But as his mummy, I was so happy. I regularly pray for Asa’s speech development and was starting to worry that no sounds had been made, other than the favourite ‘raspberry’ and a long ‘ahhhhhhhh’ shout kind-of noise! I have often wondered with a tinge of sadness if / how his hearing loss might impact upon his speech and language development…

Today feels like a huge leap forward. I am looking forward with eager anticipation to Asa’s speech properly developing. I long to hear him say, “Hi mummy”, or “Goodnight daddy”. In fact, I am looking forward to this just as much as I did when Emelia was little. I am not naive to think his speech development will be plain sailing – children with Down’s syndrome often have delayed language skills and require speech therapy (hence the use of Makaton signs) – but today has given me hope that we are on the right track, however long it may take. I know he will get there. In his time. In God’s time.

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For our Christian friends and family… some prayer points if you’d like to pray:

– Praise God for Asa’s latest development and pray he’d continue babbling regularly!

– For Asa’s future speech development, that he would have speech that is clear so he would be understood by those he is in contact with as he grows up.

– For his hearing to improve (next hearing test is April 25th), so that it would not be a barrier to effective communication.

– For Jon and I to continue to be motivated to work on all the necessary exercises needed for Asa’s development, e.g. speech sound cards, physio exercises, facial exercises, sitting up, rolling, and Makaton signing.

THANK YOU! :-)

“We Know What We Are But Know Not What We May Be”

Since January, I have had recurring gallstone attacks. The pain is often unbearable, and most of the time, I would rather experience labour again than these attacks. Honestly! Many of you will have gallstones too, but will remain unaffected. Every now and then, these gallstones block the main duct of the gallbladder resulting in this horrendous pain that cannot be alleviated by the cocktail of prescription drugs I currently have. Emelia knows that sometimes mummy has a “very sore tummy” and she is so caring, so compassionate and so kind (usually!). A lot of these attacks have been on the weekend which means Jon is able to help out with the children and sort their meals. I should add here that the majority of these attacks come in the early hours of the morning, usually around 3-6am and can last anything from 1 – 8 hours, sometimes lasting on-and-off for a couple of days.

This weekend, I was ill again. Jon took the children out for the morning while I caught up on some much needed rest. When they all arrived home on Saturday morning, Emelia had made a card for me (ahead of Mother’s Day the next day). She rushed straight up to me, gave me a cuddle, handed me the card and proceeded to ‘take care’ of me. She brought me the remote control for the TV (she knows me well!), and came over with her Peppa Pig medical kit. Nurse Emelia was brilliant and gave me a thorough poke and prod!

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Jon took the children over to the church for an open day. This lovely photo was taken by the very lovely Bethany Newberry – thanks Bes!

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Emelia taking care of mummy! (This is not my finest photo – remember, I was poorly!!)

Emelia’s kindness made me wonder about her future career. Lately, I’ve been more preoccupied with Asa’s future; what will he do? Who will he be? Will he attend college? Will he have a job one day? What kind of job might he have? This weekend, I have been thinking more about Emelia’s future. This little girl of ours is… well, where do I start? She is independent(!), caring, funny, assertive(!), chatty and compassionate. Seeing how well she ‘took care’ of me, I wondered whether she might become a nurse or a doctor. My best friend Amy is a nurse and Emelia often refers to her as ‘Nurse Amy’. Emelia would make a great nurse. She would also make a great entertainer of some kind, as she loves to entertain and put on ‘shows’ in the evening, singing and dancing around her piano. One of her favourite things to play with is her wooden kitchen and all the food items stocked there. She is forever having tea parties and ‘cooking’ – perhaps she’ll be a chef… She is very inquisitive too – always asking “why?” or exploring new places or things, so maybe she’d become a police woman, detective or work for the MI5 or MI6!

Then I moved away from thinking about Emelia’s career because, to some extent, it doesn’t really matter to us what she does, so much as who she is. We pray she’ll grow up to know and love God for herself, but this cannot be forced (nor should it be) – she’ll have to make that decision for herself. She is incredibly friendly and social, she loves running in the fresh air and she enjoys meeting new people, whether that is at the beach, park or soft play. She is funny and kind. One of my favourite things about her is that she regularly says “I love you mummy” and “I love you daddy” – and she even adds in sometimes “I love Asa” and my heart melts that little bit more. This little girl has a lot of love to give. I know that as both our children grow up that they will be very special to each other (among the usual sibling rows and complaints!). We’ve already seen how sweet and loving Emelia is towards her baby brother and we know she will be an amazing sister to Asa when they’re older too.

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I’m reminded of a t-shirt that a beautiful young lady, Natty, wears. The t-shirt has a quote from Hamlet:

“We know what we are but know not what we may be.”

To see the lovely Natty wearing the t-shirt, click here

How apt are these words? Asa and Emelia are individuals and no-one can know what the future holds for them, only God Himself knows that as He has a plan and a purpose for each of their lives. Asa has Down’s syndrome, that we already know, but the world is his oyster, just as it is for Emelia. Yes, we know things are going to be a bit different for Asa than they will be for Emelia, but opportunities are increasing for people with Down’s syndrome and the future is wide open! We are looking forward to seeing Asa’s personality, passions, creativity and dreams come out, just as much as we are with Emelia. We have such hopes and dreams for these two precious children of ours – and we hope you do too.

So to any parents of babies or children with DS, or if you have DS yourself, don’t lower your expectations, dream big! The world is your oyster. xx

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20130314_115014Later on in the week, I took Asa to his physiotherapy appointment whilst Nanny and Grandad Shaw looked after Emelia for me. Physio always seems to wipe poor little Asa out and he always sleeps well afterwards! How cute is he!!!

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After Asa’s physio, Nanny and Grandad Shaw had Asa while he napped so I could take Emelia to the park for some quality one to one time. Sometimes I feel guilty that I don’t spend enough time just ‘being’ with Emelia, so I love, love, love getting some time with just her. One of her favourite things to do is to visit the park – her smile is proof enough of that. What a beautiful smile she has! There isn’t anything much better than a laughing, happy, contented child. Jon and I are so blessed to have both our wonderful children in our lives. We are also blessed to have family and friends nearby who are willing to help us out with childcare. Thank you especially to Nanny and Grandad Shaw. :-)

Beaches and Sunsets Are Made For Each Other

Today, we spent the afternoon at Southerndown, perhaps one of our favourite places – the cliffs and the beach, the scenery and the rural walks – beautiful. We took a picnic but as it was rather cold to sit outside, the four of us had our lunch in the car at the top of the cliff. We decided after lunch that we would move the car to the bottom car park so it would be less walking for Emelia and pushing the pram. However, the car refused to start. Yikes! Some kind people gave Jon a hand and eventually it got going again. Afraid it wouldn’t start again, we agreed that one of us would stay in the car with Asa, and keep it running. Jon and I took it in turns to walk with Emelia on the beach. The sun was setting as we were walking. Beaches and sunsets are made for each other, a bit like jelly and ice cream, flowers and vases, icing and cake – like Jon and I, and our lovely children. We are made for each other. How I love our little family!

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Today has been a lovely day, spent marvelling at creation, eating, laughing and making memories. It’s a bit like the calm before the storm, as we know January is going to be very busy. Already we have 10 appointments for Asa lined up and one for me! Over the next few weeks, Asa will see the ENT (ear, nose and throat) specialist about his stridor (noisy breathing), physio, the community paediatrician and blood tests, feeding clinic, portage (child development / psychology service), audiology MAP (Multi Agency Planning), and in two weeks time, we will start at the ‘Speak and Learn’ communication group for children with Down’s syndrome. Most of these appointments require child care for Emelia, so thank you to friends and family who have already offered.

So, as we embark on a new year, we are looking forward to seeing what God will bring in 2013. We are feeling positive about the future – we’ve definitely ‘turned the corner’ and life is a lot less scary (for now!). We’re counting our blessings (namely two that go by the names of Emelia and Asa), and praising God for his goodness and faithfulness to us now, and in the future. To our friends and family, happy New Year! xx