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.

Last Feeding Clinic!

Today Asa has been discharged from the feeding clinic! I am thrilled as it means Asa is eating ‘normally’ and the speech and language therapist and dietician have no concerns over his eating or dietary management. Considering his gross motor development stage is around 4-5 months (due primarily to him not being able to sit up unaided), he is able to eat baby food that is age appropriate – so he is currently 10 months old and he is eating baby jars for a 10 month old. The dietician said she would not have expected this and said Asa is doing very well. There are still some challenges with Asa’s feeding, such as him tolerating larger lumps and occasional gagging and almost choking, which I hope will improve with time. We have a few recommendations for Asa to be going on with:

–          Doidy cup for drinking (an open slanted cup)

–          Lateral placement (i.e. Directing the spoon to alternative sides of Asa’s mouth (so that he learns to chew properly)

–          Continue to offer a range of textures and tastes

–          Offer ‘bite and disolve’ finger food, such as Organix goodies ‘toddler crisps’

–          And finally, my least favourite: messy food play. Eww, gross! (I promise to share a few photos, one day! Please hold me to it!!)

 

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A good friend will often encourage you at times when it might be most needed. Or even just write you a random note for no reason. This evening, I found this post-it note on one of my kitchen units. Thank you Coral, for your encouragement and friendship! :-)

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The EEG

Where do I start with this blog post?! The past few days have been incredibly stressful, worrying and full of prayer. Yesterday, Asa was in hospital for the day, in the Children’s Ocean ward. But let me start at the beginning.

A few months ago I discovered an amazing website, www.noahsdad.com. It’s a blog written by the parents, primary the dad, of a little boy called Noah who was born Down’s syndrome. (In America, the terminology is Down syndrome). Noah’s dad writes the majority of the blog posts, and his mum, who is a paediatrician, writes the medical posts. I read lots of this very informative and honest blog when Asa was very young. One stuck out in my mind. It was about Infantile Spasms, a form of baby epilepsy, which, if left untreated, can cause cerebral palsy / brain damage and regression in development. It is much more common in children with Down’s syndrome so it is something to be aware of. I filed it away in my brain with most of the other information I processed.

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A few weeks ago, Asa started doing some odd little movements. I can’t really describe it effectively, but his eyes would widen, he would shudder all over and his mouth opened in a strange and unusual way. Sometimes his arms would come out at 90 degrees to his body. At first, these ‘movements’ were 1-2 seconds long. Blink and you’d miss them. I didn’t tell anyone about them at first, hoping it was just my eyes. I think I was avoiding the issue. I was scared. One day I mentioned it to Jon, who had also been noticing them. After a couple of weeks, they seemed to be lasting longer and were happening more frequently. This past weekend, these ‘episodes’ were occurring as much as ten times a day, each lasting for up to five seconds. All of a sudden, I was frightened. Friends were around for tea on Saturday and one of their children asked me, “What’s Asa doing? Why is he shaking like that?” I was terrified Asa might have Infantile Spasms.

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On Monday, I called Dr Kontos, Asa’s paediatric consultant in Llandough. She was busy so I left a message with the receptionist. About ten minutes later, Dr Kontos called me back and told me she would like Asa to be seen at the Children’s unit of UHW as soon as possible. She had already contacted a doctor in UHW and both agreed Asa needed to have an EEG to find out what was going on – did Asa have Infantile Spasms? I was told I would receive a phone call. It was all a bit surreal.

At 8.30am yesterday, I had a phone call asking me to take Asa to UHW as soon as possible and they were booking him in for an EEG. I packed a little bag of food and clothes for Asa, and snacks for me, and headed off. We arrived at the Ocean ward of the Children’s unit and Asa was admitted as an inpatient. I later found out this was because he would receive an EEG quicker than as an outpatient, and then, depending on the EEG results, if medication was needed then Asa would stay in overnight.

Asa’s EEG wasn’t until later on in the afternoon, so I was feeling rather nervous and sick the whole day. The mum of a small baby girl opposite us was very friendly, but I felt myself getting teary talking about Asa. I gave Asa his lunch, which he refused. He even cried on his yogurt which is very unlike our sweet-toothed (or sweet-gummed?!) boy!* I just had time to wolf down my lunch before we were called for the EEG.

The EEG itself wasn’t as scary as I’d imagined. The lady conducting the test was very nice, but factual. I can’t remember her name or her job title. I’m normally not too bad at remembering these details, but I think I was feeling the strain! It turned out she was a Christian too. Isn’t it wonderful that when we’re in stressful or difficult situations, God often reminds us that He is there with us? She pasted little wires to Asa’s head, whilst explaining the procedure. (For some info on EEGs, click here).

Asa would need to asleep for half of the test and awake for half, as the electrical signals in the brain are different when we’re sleeping. The wires were linked to a computer which recording the brain’s activity as waves, with peaks and troughs. When Asa was awake, he had bright lights flashed very close to his face for set periods, as well as letting him play. A camera was recording the whole time to capture any ‘episodes’. About 35 minutes later, we were done. It felt like forever, especially as my arm and shoulder felt paralysed from holding Asa still! The neurologist would look at the results and decipher what the various waves meant. We were taken back to Ocean ward to find Jon waiting next to Asa’s empty cot. It was amazing to have him there. I will tell Asa one day of how his daddy was there for him, awaiting his return.

Finally, the results were back, albeit very late in the afternoon and we thought we’d been forgotten about. The hospital doctor we saw on admission came to tell us the good news that Asa’s EEG showed no signs of infantile spasms and that as he wouldn’t need medication, we were able to go home straight away! She said that although Asa had no EEG evidence of IS, she couldn’t rule out other abnormalities – if we notice anything we are unsure about regarding Asa’s behaviour, that we are to see Dr Kontos.

So, for now, we are relived to be home with Asa having had the all-clear for IS, and we are thanking God for this good news.

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*The reason Asa refused lunch and desert was because later that day, as I was giving him his milk and snack before leaving hospital, he was very sick. Twice. One vomit completely covered me and I had no spare clothes. How miserable! And then the poor little lad was sick a further three times in the car on the way home. D&V bugs really are not fun!!!!

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 :-)