Makaton Training

Today, Jon and I started our formal Makaton training. We have completed part one, and the second part is next Tuesday. I loved it! I don’t want to sound like I am bragging, but I find it quite easy to pick up Makaton, as I do in general with languages. Some signs are a bit obscure, but a lot of them make sense. The challenge now is to remember these signs, sign appropriately and sign consistently to Asa. I do feel a bit under pressure as the main carer of Asa. Jon doesn’t find Makaton as natural as I do, so I’m trying to gently encourage him… (Ok, more like on the spot tests, poor man!!)

A few people have asked me why we’re signing with Asa. Some people assume it is because of his hearing loss. There are a few reasons, and I’d love to share these with you, as well as some background information.

Makaton is a sign, symbol and speech language programme to help children and adults with their communication. Using signs does not replace speech, but used alongside normal speech, in spoken word order (unlike  BSL (British Sign Language), which uses a different word order). Using signs can help children with no or limited speech or speech that is unclear. Symbols can also be used to support communication in many different ways. Symbols match to a sign, and can be used to help those with no or limited speech or who are unable or prefer not to sign.

With BSL, you sign every word in the sentence. With Makaton, you generally only sign the key words. So in a sentence like “Look at the ball”, you would say the whole sentence but just sign ‘look’ and ‘ball’. It’s very important to remember to speak all words out loud and not just silently sign.

Jon and I would love to be able to teach some friends and family some signs to use with Asa. Please ask us if you have any questions or want to know more. It is our hope that we can host an informal coffee morning at our church to show a few signs to friends there, particularly those that volunteer in the crèche or Sunday school.

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You can get free Makaton resources from the Makaton charity website. Friends and family, please click HEREto browse the selection (PDF files). These are usually seasonal, plus some nursery rhymes and booklets.

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The following information is from the Makaton charity website:

Being able to communicate is one of the most important skills we need in life.  Almost everything we do involves communication; everyday tasks such as learning at school, asking for food and drink, sorting out problems, making friends and having fun.  These all rely on our ability to communicate with each other.

Makaton is a language programme using signs and symbols to help people to communicate.  It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order.

With Makaton, children and adults can communicate straight away using signs and symbols.  Many people then drop the signs or symbols naturally at their own pace, as they develop speech.

For those who have experienced the frustration of being unable to communicate meaningfully or effectively, Makaton really can help.  Makaton takes away that frustration and enables individuals to connect with other people and the world around them.  This opens up all kinds of possibilities.

Makaton uses signs, symbols and speech to help people communicate.  Signs are used, with speech, in spoken word order.  This helps provide extra clues about what someone is saying.  Using signs can help people who have no speech or whose speech is unclear.  Using symbols can help people who have limited speech and those who cannot, or prefer not to sign.

Makaton is extremely flexible as it can be personalised to an individual’s needs and used at a level suitable for them.  It can be used to:

  • share thoughts, choices and emotions
  • label real objects, pictures, photos and places
  • take part in games and songs
  • listen to, read and tell stories
  • create recipes, menus and shopping lists
  • write letters and messages
  • help people find their way around public buildings

Today over 100,000 children and adults, use Makaton symbols and signs.  Most people start using Makaton as children then naturally stop using the signs and symbols as they no longer need them.  However, some people will need to use Makaton for their whole lives.

Hearing Test, April 2013

Why do I always get nervous attending the hospital for Asa’s hearing tests?!!

The old familiar ‘sicky stomach syndrome’ reared its head again as I drove to UHW, even though Jon and I suspected Asa’s hearing had improved. Walking in to the clinic, I was greeted by one of the audiologists who remembered Asa by name, immediately putting me at ease. Three minutes later we were called through to the testing room.

This time, the audiologists wanted to test Asa’s hearing without the use of the softband bone conductor, so they could build up a picture of the exact nature of his hearing loss. Today, he responded to sounds at 45 dB (decibels), which was the same as the last time in January. The difference between the two tests was that in January, Asa had worn his softband and today he didn’t. This shows that there is some improvement, however small, in Asa’s hearing. Normal speech is around 55 dB, although some speech sounds are quieter, such as ‘s’, ‘sh’, ‘th’, ‘f’ and higher in frequency. In other words, at the present time, Asa is responding to most sound levels and mid-range frequencies. Jon and I ‘test’ him at home regularly – one of us stands behind him, out of sight, and whisper ‘s’ or ‘sh’ and watch Asa’s reactions! He’ll be getting fed up of us sometimes. In fact, sometimes he doesn’t even respond to loud calls of ‘ASA’ – we think he’s protesting our amateur testing! :-)

The tymp test also showed his left ear is currently free of congestion (glue ear), but the right ear still remains congested although there may have been a tiny improvement. Glue ear can fluctuate though, particularly in Winter months. However, for now, we are praising God for these small improvements.

Asa’s next hearing test is the morning of July 16th.

Prayer points:

1. Praise God for the improvement in Asa’s hearing!

2. Pray that Asa’s hearing will continue to improve, that the glue ear completely resolves.

3. Pray that Asa’s speech will not be negatively impacted by his hearing loss.
(Other factors may affect speech too, so please join us in praying for Asa’s speech in general, that he would have good muscle tone to form the correct shapes and would be able to effectively communicate with everyone and be understood).

4. Pray that Jon and I would learn Makaton effectively and put it in to practice – we’re on a course in May – I’m excited!

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Thank you so much for your continued prayers for our little family :-)

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! :-)

The Waiting Room Conversation

This afternoon I was at the Doctors (aka my second home!) for a double appointment for Asa’s reflux and my gallstones. In the waiting room, an older gentleman asked me to turn the pram towards him so he could see baby Asa. We were chatting about his grandchildren and my children. He was looking adoringly in to the pram and saying how lovely my baby was. I took the opportunity to tell the man that Asa has Down’s syndrome. I could tell he didn’t know! His reaction was something along the lines of, “I’d never have guessed, with some of them you can tell straight away can’t you? But he doesn’t look it.” This is my point – what does Ds look like? And what did he mean by “he doesn’t look it”? Shouldn’t it be instead, “he doesn’t look like he has it”? Asa isn’t Down’s syndrome, he was born with it, he has it. It is a part of him, not defining him. These are just my jumbled thoughts, apologies if it doesn’t make much sense!

The gentleman was nice enough, and kept saying “oh I hope your little boy will be ok”, “I hope he’ll be healthy”. It was a little frustrating, because even though I kept saying, “Yes, actually he is healthy.” I must have reiterated this point three or four times throughout our conversation. He then told me about a man with Ds he knew when he was younger, and the man died young. (Good job I wasn’t in need of any encouragement!!!). I explained that each person with Ds is different and needs vary from person to person, just in the typically developing population! Asa is healthy. Down’s syndrome is not an illness. Yes there are certain complications that can arise with Ds, such as heart problems, thyroid function, issues with hearing and vision, as well as mild to moderate learning difficulties. A very common feature of Ds is low muscle tone, which can cause gross motor skill delays, such as sitting up and walking, and can have knock on effects on internal muscles. A person living with Ds may have every single one of these characteristics, or just a couple. Asa has a moderate hearing loss (which we think has improved lately) and reflux (possibly due to low muscle tone), but this does not make him unhealthy.

It’s always great to take these opportunities to challenge misconceptions and myths about Down’s syndrome. I actually quite enjoy having these discussions with people. I didn’t get the man’s name, but I hope he took something positive away from our conversation. One more person in the world has hopefully had some preconceptions challenged. One more person got to look baby Asa in the eye and see that Down’s syndrome isn’t something to be feared.

My boy and I – we’re myth busting, one person at a time! :-)