At home

Baking with Alfie
08/09/2020

Baking with Alfie

Alfie with logoMy name is Alfie. I’m 6 years old and I just love baking. I am blessed with an extra chromosome. I was born 6 weeks early, I clearly couldn’t wait to get out into the world and start baking! I have a severe speech and language delay, but I find making baking videos really helps my speech, language and also my Maths as I can practise in a fun, no pressure environment.

Alfie rolling pastryCan you believe I actually used to be afraid of the noise the stand mixer made?! I know you wouldn’t believe it now, would you? Just goes to show you that in life you should always push yourself outside your comfort zones as you never know what you’re a capable of achieving until you do.

I’m now in Year 2 at my mainstream Infant school, having just returned back to my proper school after 6 months of Mummy school. I love swimming, water, books, music, dancing and generally just being outside. Food-wise I love all foods, but particularly chocolate, crisps, ice cream, blueberries & obviously cake! I love going on long walks and regularly walk 2 miles + each day. I hope you enjoy my baking and it inspires you to get your #BakeOn #BakingWithAlfie

Alfie and MummyThe mum behind the baker...

Hi, I'm Sarah, proud Mummy to Alfie, who has been blessed with an extra chromosome!

My Makaton journey started 6 years ago when Alfie was born. I first started with a Makaton Signing for Babies course at my local children’s centre and then graduated onto Dave Benson Phillips, Singing Hands (Tracy and Suzanne are absolute goddesses in our house!), and Mr Tumble.

I then decided I wanted to increase my Makaton knowledge, so I could help Alfie find his voice and gain his independence. So, I then did my Level 1 & 2 Makaton training, and I have recently just completed my Level 3 training. I now can’t wait to start my Level 4 training later this year, as I’ve decided I’d really like to progress to become a Makaton Tutor.

Alfie and birthday cakeDuring lockdown, I started #BakingWithAlfie across Facebook, YouTube, Instagram and Twitter, where we use Makaton. Not only does it help Alfie with his speech development, but it also increases awareness of Makaton across a wider audience, in an underused setting. Alfie has a severe speech and language delay and we use his baking as a way to introduce SALT and Maths work in a non-pressured environment, and we also happen to get some tasty bakes out of it too! I'm hoping to set this up as a business moving forward - fingers crossed!

Please follow us via Facebook, Instagram, Twitter, and YouTube.

Author

Sarah C

8th September 2020

At home

Totemigo and Harry
20/08/2020

Totemigo and Harry

Harry with his Totemigo

Harry with his Totemigo We started signing with our son Harry, who has Down's syndrome, from when he was about 9 months old. Seeing the difference Makaton made to him and how he was able to communicate with us before he could talk, made me want to continue the courses and become a Makaton Tutor.

Harry is now verbal, but we still use Makaton to aid his learning and to ensure that he has a way of communicating with others if they are finding his speech unclear and difficult to understand. Harry loves to use Makaton with singing and the school choir have started using Makaton, which is lovely to see how he can now be fully included in their performances.

The past few months have been quite challenging, having to home-school Harry and constantly think of new activities to hold his attention. Then Makaton launched the Totemigo, which I had been eager to use since I had been shown it on our Tutor Study Day back in November. I immediately joined the Totemigo website and started to make symbol strips. These are really easy to create, thanks to the template that is provided online and you can also download ones that other people have already made.

Harry has previously used colourful semantics in his speech and language therapy sessions, so I thought that this would be a good place to start with him. Due to the tactile nature of the Totemigo, Harry was instantly drawn to it and was desperate to try it out, even before he knew how to use it.

We have used the Totemigo to create sentences and Harry is now starting to recognize different word types such as nouns, verbs and adjectives. When using the Totemigo, Harry chooses the different symbols himself and then reads the sentence aloud. If he finds it doesn’t make sense, he then goes back to correct himself. He then signs the sentence and records it in his book.

He enjoys having the symbols in front of him to check he has remembered the sentence correctly. This has given him a far better understanding of how to construct sentences and can even now replace given words with synonyms, which he loves to do. Harry has loved using the Totemigo and we are planning to create mixed-up fairytale strips, so that he can make up some amusing stories containing a range of different characters and settings.

 
 

I can see that this is a really useful tool for schools and speech therapists. In fact, after speaking to Harry’s class teacher and 1:1 about the Totemigo, they are already planning to order some to help support many of the children’s learning needs. It is also extremely robust, so won’t get broken easily, as due to its bright colours and pleasing shape, every child will undoubtedly be desperate to use it. We look forward to using it more.

Totemigo is a multi-purpose tactile tool which uses Makaton symbols to help you communicate and learn in a variety of fun ways. You can use Totemigo for making choices, sentences, matching and much more.

Totemigo is available to purchase from our shop for £59.

Author

Jemma S

20th August 2020

At home

SWAN UK - Dottie's story
17/04/2020

SWAN UK - Dottie's story

Dottie

DottieWe've been using Makaton in our family for almost 9 years which is something I never expected all those years ago. When my eldest son Henry was born we did some baby signing classes, which I found very rewarding and really bonding between us as well. When Dottie was born we signed up to do them again as I’d enjoyed it so much the first time around. Dottie is now 8 years old and we didn’t realise then what lay ahead.

Dottie has an undiagnosed genetic condition and this presents itself largely with her having learning disabilities and epilepsy. At 18 months old, Dottie still hadn’t hit many of the typical milestones, such as walking or talking; she also had other medical and health issues which became apparent around this time.

This meant lots of hospital appointments, tests, procedures, planned and emergency hospital stays, and different therapies. These appointments and therapies are still continuing now.  We receive excellent care with everyone doing everything they can but we still don’t know what is causing Dottie’s challenges, and why she isn’t developing typically.

Marie and DottieThis has been extremely challenging over the years and I am grateful to be supported by an organisation called SWAN UK (this stands for syndromes without a name). They provide information and support to families with children and young adults with undiagnosed genetic conditions and these children are affectionately known as swans.

Dottie is largely non-verbal, although she has recently started saying some words and she has the sweetest voice, however Makaton is one of her main ways to communicate. I’m so grateful I knew about Makaton so early on and was able to easily incorporate it into our family life.

At one year old I started using 20 key signs with Dottie consistently for more than a year before she started to sign back, I am so glad I didn’t give up, it was just going to take Dottie longer to learn the signs than her brother.

At 3 years old Dottie’s first sign was duck, which she signed in hospital when she was very poorly: it was such a wonderful and reassuring moment after being extremely worried for the previous few days in hospital.  Drink, Eat, More and other animal signs came shortly after that.

Slowly but consistently Dottie was always making progress adding to her signing repertoire and at 5 years old knew around 300 signs.  It was at this point I attended a Makaton workshop (Levels 1 & 2), as I realised after being largely self-taught (with the help of Dottie’s SALT) I needed to learn more signs to help teach Dottie more.

The course was so valuable and really cemented my knowledge. Up until this point we weren’t using symbols very much, as I didn’t fully understand them, and the course was also very helpful for this. Both at school and home we now use a visual timetable and signs for now and next and choosing items, which Dottie responds really well too. I wish I had attended the workshop earlier and I now encourage friends who have just started using Makaton to go on the course as soon as they can.

We noticed from an early age that Dottie loved watching TV programmes with people signing, particularly Something Special with Mr Tumble.

Dottie with Singing HandsDottie also loves music and singing: she is a big fan of Singing Hands and really enjoys watching them. We noticed that Dottie was learning lots of new signs and picking them up quickly from Singing Hands and she would often sign songs to herself in her bedroom. Now she is able to say a few words, we hear her singing the tune, saying some of words and signing along, its so wonderful to see and hear. Music, together with signing and singing, definitely helps Dottie to learn and retain new signs, it also helps me do the same. We get so much joy watching Singing Hands together, we’ve also been able to see them live and they are such lovely ladies too. We can’t recommend them enough.

Dottie and family with Singing Hands

Dottie signing FishIn the last couple of weeks we have been using the Makaton resources more than ever as we are home during the pandemic and trying our best to continue Dottie’s learning. We found the Your Home resource pack easy to use, really useful and fun. Dottie particularly enjoyed picking a symbol out of the hat and finding it in the house, we’ve also learnt a few new signs through this and its been a fun game. Now Dottie’s signing repertoire is quite large we are working on putting 2 and 3 key word signs and symbols together as our next goal.

The whole family enjoy signing with Dottie. Mike, Dottie’s Dad, also self-taught or taught by me, is planning on attending a workshop and the new online courses will be very useful for him. Dottie’s brother Henry has also expressed an interest, his signing is very good, he often corrects me when I make a mistake and it's lovely watching them sign to each other.

24th April 2020 was SWAN UK’s annual awareness day, Undiagnosed Children’s Day, raising awareness and funds to support families with children with undiagnosed genetic conditions. Many families like ours already feel isolated and lonely and need SWAN UK’s support more than ever  during these difficult times. Within the swan community, our children with undiagnosed genetic conditions are affectionately known as swans and Dottie and I would like to show you the sign for swan and share the swan in 60 seconds challenge with you.

Author

Marie P

17th April 2020

At home

Richard and Lydia's story
30/03/2020

Richard & Lydia's story

Lydia and Richard

Lydia and RichardI have been learning Makaton for 5 months now. I started learning Makaton to help my daughter develop her communication.

Lydia (now two and a half years old) is moderately deaf and has worn hearing aids from 16 weeks old. Having been identified as having a speech delay we thought Makaton would be a useful way to support her with her communication.

I started learning Makaton at a local weekly class and my signing vocabulary built rapidly. The regular practices of the early stages, with the gradual introduction of new stages each week, has meant that I feel very confident with stage 1 and 2 vocabulary. The relaxed nature of the class  and the amazing group of people who attend, with ages differences spanning 60 years it has been an absolute pleasure to learn and I now go as much for the enjoyment as for the necessity!

Lydia signing cakeWe have seen real impact using Makaton with our daughter.

The first time she linked two words together was speaking and signing (Cake please), which really emphasised to us how beneficial it could be.

The toughest challenge we have faced is trying to build Makaton into our daily lives and routine, as forming new habits and breaking old ones is extremely difficult. We are gradually having success and are slowly building more words into our daily activities, mostly at the moment centred around food!

My other daughter, who also enjoys learning new signs has started using Makaton at dinner times too (though mainly to combat the talking with her mouth full conundrum, which admittedly was not our initial motivation for learning Makaton!

I would highly recommend learning Makaton, either for the sheer joy of it or to make a significant impact on someone’s life, and if you can do it as part of a group, even better!
Author

Richard K

30th March 2020

At home

Isabella's Makaton journey
30/01/2020

Isabella's Makaton journey

Lucus and isabella

Lucus and IsabellaI came across Makaton when my little brother Lucus was born with Down's syndrome.

I sat in on a course with my Mum and Dad, we then realised not only was it going to be a massive help to Lucus but it was going to be really useful for my other brother, Alexander, age 2, who had just been diagnosed with cerebral palsy after a stroke in my Mum's womb.

I continued just picking up key words and concentrated on using them with Lucus. Then at age 11, after watching Wayne Barrow sign to songs, I decided that I wanted to be able to do the same for Lucus.

My mum shared a video of me and it had over 30k views in a matter of days and it made me realise that other people were interested too. That's when Isabella Signs was created across all social media platforms.

Fast forward now 3 years, I have well over 120k followers across my socials, including followers from around the world. And now my brother Alexander is completely verbal, and Lucus is well on his way.

He no longer gets frustrated as we now all have a way to communicate with him thanks to Makaton.

On our Makaton journey, Lucus and I have found ourselves in lots of unique situations whilst raising awareness.

Last week we were on The One Show where they surprised me and Lucus with my all-time favourite singer, Louis Tomlinson from One Direction, which was a dream come true!

They also surprised me with the legendary Dave Benson-Phillips and Zanna from The Makaton Charity. Louis asked me to introduce his first ever live performance of his new song in Makaton.

I feel very blessed to be supported through my whole journey by The Makaton Charity. I have purchased several of their resources including the Core Vocabulary USB stick, which has been invaluable to me and my family. We also love that they regularly post free print out resources .

My daily sign vlogs have even helped my younger sister Indiana (6) with her confidence: she was very shy but after filming in some of my videos she's now no longer shy. She has also gotten great at signing!

Author

Isabella E

30th January 2020

 

At home

Dorothy's story
05/11/2019

Dorothy's story

Dotty

DottyWe've used Makaton with Dorothy since she was very little, literally a few weeks old.

We started just using basic everyday signs for milk, mummy, daddy, hello and bye bye, we weren't particularly strict about it but tried to remember to use them as much as possible. I remember her being quite young and making her first attempt at the sign for milk and looking delighted when a bottle was produced.

Her signing at the start was few and far between, but it made me determined to carry on as she was clearly understanding my communication.

When she was a few months old, our local charity was running a Makaton Beginners’ Workshop (modules 1-4) and I was interested in expanding my signing beyond the few that I had picked up from Mr Tumble, so I signed up.

Dotty sticking out her tongueThe course was great and gave me the confidence to really go for it and start signing with Dotty - the whole family got involved too. This was something that I really pushed and encouraged as it was important to me that Dot had more than just me who she could communicate with.

Her first official sign, and one she still uses regularly today, was dog. She was playing with our pooch (Winston) and he moved away, she signed dog indicating she wanted him to come back and play again.

It was amazing, proper meaningful communication, done unprompted.

She used it daily after that and quickly added more to her repertoire. She is now aged 2 (27 months) and has over 100 signs, including lots of animals, and is putting them together with speech to make short sentences.

Learning Makaton has not stopped or hindered her speech development at all. We've always used Makaton alongside speech, and she has copied that behaviour. Her speech is really coming through now with lots of words, plus it's really helped her understanding.

It's also stopped her getting frustrated by giving her a means to communicate while her speech is developing.

I feel Dotty has flourished using Makaton by giving her greater independence and autonomy to communicate her wishes effectively. For the family and I, Makaton has given us a way to enhance our relationships with Dotty – finding common ground to not only communicate on a practical level, but also to play, have fun and love our time together.

Author

Rhiannon H

5th November 2019

At home

The power of signing
07/10/2019

The power of signing

Barnaby as a baby

Barnaby as a newborn babyOur son Barnaby was born in January 2017. We knew when I was pregnant that our baby had Down’s syndrome so we had a bit of time to adjust to the news and learn about what lay ahead for us. We met with various people who gave us advice for the early weeks and months which was really helpful and reassuring.

We learned that our baby was likely to have a global development delay, meaning they would take a little longer to reach certain milestones like walking and talking. Everyone we spoke to mentioned Makaton, but we knew very little about using signing with a baby and how it might help. Our daughter Martha, who is two years older than Barnaby, had been to baby sign classes, but as she was a pretty early talker it never really became part of our way of communicating.

Barnaby as a baby, wearing a party hat Having picked up a few Makaton signs from various groups and watching Mr Tumble, we started using some signs with Barnaby when he was about 6 or 7 months old.

We started with just a few basic ones which might help him communicate his needs; ‘hello’, ‘more’, ‘food’ and ‘milk’. To start with Barnaby mostly used gestures rather than sign – pointing to things and nodding and smiling.

By the time Barnaby was about 15 months, he had started to copy us and was doing the sign for ‘more’ and ‘milk’ if we modelled it for him. Very gradually this progressed to him doing the signs in response to a verbal cue and then when he was about 18 months old, he would request his milk unprompted. This was a wonderful breakthrough and I can’t imagine how fantastic it must have felt for Barnaby when he was able to ask for something and have his needs met.

As Barnaby’s signing vocabulary expanded to some animals as well as ‘food’, ‘no’, ‘thank you’, ‘hello’ and ‘goodbye’ he then had another breakthrough when he was about 22 months. He looked at me and signed ‘more’ followed by ‘food’. This was the start of a 24 hour binge where I had to reward him with a snack every time he made the request!!!

Our next breakthrough moment was just before Barnaby turned two. We had done bath time rather late and my husband and I were keen to get Barnaby and his sister into bed, so instead of all having a book together I said to my husband, let’s just pop Barnaby into bed now. Barnaby looked at me and did the sign for ‘book’. It was such a special moment – to think that he knew his routine and wasn’t going to let us get away with skipping his special reading time.

I often use this example when telling people how powerful signing is. If Barnaby had not had the ability to communicate with us using Makaton he wouldn’t have been able to ask his Mummy for a book for the last nine months!

My favourite signing moment with Barnaby though was when we had our annual appointment with his neurodevelopmental paediatrician just after he turned two. She had given him a toy car to play with on the floor. He crawled over to her, wedged the car behind her bottom then looked up at her and signed ‘where’ and ‘car’! After we both stopped giggling she concluded there was no problem with Barnaby’s communication – or his sense of humour!

Barnaby as a baby, with his familyAbout six months ago a friend was sitting with Barnaby and he was signing something to her which she couldn’t understand. She said she’d love to have a way to learn some signs, especially so she could teach her daughter as Barnaby would be joining her at nursery a few months later. I reflected on this and realised that it would be helpful for all Barnaby’s little friends and our immediate family to have a way of learning some key signs. And so the next day Barnaby and I started a little instragram account (called @signwithbumblebee) to demonstrate Makaton signs.

We try and post a sign every day if we can, and love to take requests from our followers. As well as helping our friends and family it has been the most brilliant way for Barnaby and I to expand our Makaton vocabulary. Even in the few months we’ve been doing this both of us have learned so much and I can’t get over how many new signs Barnaby has picked up.

Many of them he is now using completely spontaneously and just today he surprised me by looking at me and doing the sign for ‘outside’ as he wanted to play in the garden. The first thing he signs when I go into his bedroom in the morning is ‘Daddy’ and he regularly does the sign for ‘ice cream’ when I ask him what he wants for breakfast! Barnaby loves music and one of his favourite activities is signing along to songs and nursery rhymes.

Barnaby as a toddlerBecause Barnaby’s speech is significantly delayed (he currently has about 4 or 5 actual words), it is so powerful for him to be able to sign. His vocabulary has expanded enormously since he turned two and he probably knows in excess of 60 signs now. He is also regularly using two signs together such as ‘where’s Martha’, ‘dog sleep’ and ‘mummy eat’.

As we go about our day he is able to react to the world around him and is always pointing things out to Mummy e.g. ‘bird’, ‘car’, ‘dog’. In addition he anticipates his routine and lets me know when it is bath time or bed time.

As Barnaby is nearly three we’re now starting to get quite a bit of help from speech and language professionals to encourage his speech and it is through this I’m really seeing how beneficial it is for Barnaby to have amassed such an extensive vocabulary through signing. Recognising objects, being able to remember them and having a sign for them means that when he is able to start making the sounds and associating them with the correct objects or actions it will be so much easier for his words to literally fall into place.

If he didn’t have that signing structure and background it would be an awful lot more difficult for him to make that leap. And for this reason it is so important that Barnaby continues to sign even when the words start coming as it provides the most wonderful scaffolding and structure for his speech.

Barnaby dressed smartlyWe all continue to learn every day and to appreciate the power of signing.

My favourite example of how special signing can be is the sign for ‘sorry’. For this sign you make a fist with your dominant hand and rub it on your heart. Barnaby often gets a bit mixed up with signs that involve touching the body, so if you ask him to say sorry he’ll rub his fist on the other person’s heart instead of his own. If that isn’t special enough, since learning this sign Barnaby’s big sister Martha often prefers to sign ‘sorry’ than say the word out loud despite the fact she’s more than capable of doing so. As we all know saying sorry is never easy, so having a gentler, non-verbal way of conveying it can make it just a little less difficult.

I cannot encourage the use of Makaton enough. It has literally given Barnaby a voice; not just to ask for things he wants, but to comment on the world around him, tell me what he’s thinking and to express his personality and sense of humour. Teaching your child Makaton is a wonderful experience and there is no doubt it helps strengthen the bond between you. It is a very intimate way of communicating as you have to be looking at one another. We don’t know when Barnaby will start talking, but I have no doubt Makaton will help him get there quicker and allow him to be better at it when he does.

Author

Claire E

7th October 2019

At home

Kerry's story
27/08/2019

Kerry's Story

Kerry with workshop certificate

Kerry with workshop certificateAt the end of September 2018 my mum was diagnosed with a rare psychological condition called Disassociative Fugue State. This condition means that the sufferer can ‘forget’ who they are, where they are or the identity of any persons around them. It can also lead to wandering off and loss of speech.

It’s cause is apparently rooted in stressful life events, events so stressful that the mind in effect takes over and protects the sufferer. It’s a very reptilian existence for Mum. She is literally operating on a fight or flight basis and nothing more, and her speech can go completely off line: she’s had a number of days with no speech. It’s not that she won’t talk, she can’t. 

Since her diagnosis there have been a number of ‘episodes’, a number of hospital admissions, and a number of tests. A number of arguments with myself and a countless number of doctors. She has also been reported as a missing person on at least three occasions with the police involved in searching for her as they deemed her high risk.

The whole world can sometimes frighten my Mum and she faces challenges each day in activities you and I take for granted. We are slowly identifying triggers to these states, so far we have sounds, particularly high pitched beeping sounds like a truck reversing and sirens. Fireworks are also hugely challenging. Did you ever notice how loudly tills beep in the supermarket? Did you ever think that your phone beeping or ringing could impact people around you significantly, like my Mum?

Smells, not as prevalent as sounds but sometimes a smell bothers her so much it can cause these wandering episodes. One such smell is coffee, which is a shame as personally I’m addicted to the stuff!

Busy places, especially if enclosed like a supermarket. People dashing about doing their business, babies crying, children screaming, personal contact with strangers, loud announcers and those awful self serve tills with the computer generated voice. Airports and hospitals are particularly bad.

We decided to learn Makaton as when Mum goes into a disassociation she loses speech, which she finds highly frustrating thus adding to her stress. She knew a bit of Makaton previously as she worked for many years as a carer to special needs people, with a particular expertise in Autism.

I’m absolutely stunned with the results. We had an excellent and understanding tutor. I emailed Sonia prior to booking the course and half expected her to say Mum wasn’t a suitable candidate for a course. I asked some odd questions about if any videos would be played and how big the class would be etc. The course was very short of people with only three of us and I know that realistically there was a chance Sonia would cancel, however she stuck with us and we completed the first stages in two day long sessions.

Since then Mum has had a few episodes, however none have thankfully yet been serious enough to involve the police again. She used Makaton for the first time when she was distressed and with her sister. She started to sign and her sister filmed it and sent it to me and I was able to tell her that Mum was saying she wanted to go home.

Another time Mum has had an ambulance called for her and she had no speech. We got onto a video call together and I was able to help Mum through Makaton to say where her pain was, where her medication was kept, what she had been eating and drinking, and that she’s slept well.

The most recent success was following a call from my aunt. She told me mum was having a disassociative episode and she was struggling to stop her running off. My aunt held the phone up as we carried out a video call. Mum didn’t recognise me, as always happens, however as soon as I started signing she almost did a double take and stared intently at the phone. I ran through some basic words we had learnt and Mum started to join in. She calmed down quite a bit and I was able to tell her who she was, where she was and who the people around her were, and reassure her she was safe.  Slowly but surely she started to come back and then her speech returned. Sadly a buzzer went off in the room which set her off again but again Makaton saved the day.

I truly believe that Makaton has done more for Mum so far than any doctor or tablet has been able to achieve for many months. It acts as a brilliant grounding tool and seems to focus her mind somewhat and drags her back into the here and now.

We still have a long road ahead and we do feel alone with it sometimes. We have good family support but as a family we are on our own with it. There’s very little information out there as it apparently only affects 0.2% of the population. Public services are so overstretched that we have six months on average between appointments with a specialist, where for an hour we tell him what’s happened and he renews the prescription and sends us away again.

Mum has no memories at all of these episodes. She literally will snap out of it and suddenly say something clearly and articulately and will realise, I guess by the way we look at her, that something happened and then we have to gently explain it to her, after all she has a right to know what happened.  We don’t know why this has happened to Mum and we don’t know if it ever be cured, but we’re working on it.

Author

Kerry L

27th August 2019

At home

Truly amazing impact
03/07/2019

Truly amazing impact

James 

I first became aware of Makaton when I started my children's nursing career around 9 years ago, however I never became familiar with it.

My son James was born in 2016 and has complex medical needs including having a tracheostomy for laryngeal stenosis (narrowing of his airway), kidney issues and heart issues which he required open heart surgery. Despite all of this James is a very fun-loving, beautiful three-year-old.

Due to James’s airway problems he unfortunately cannot vocalise. When James was around 6 months old we were introduced to a speech and language therapist who began to teach us the basics of Makaton.

Anna, Ryan, Kevin and James (L to R)In the beginning it was a lot to get used to and it was quite overwhelming as you never think you are going to need to need and use signing for your children. Thankfully we did continue to learn and use Makaton signing with James and he has picked it all up so quickly.

Anna, Annmarie, Ryan and James (L to R)We continue to see a speech and language therapist at home on a regular basis and it has been really good in helping us along with our Makaton signing. It has allowed James to communicate with us allowing us to understand his feelings, what he wants and needs.

Recently, with James’s sister Anna (5 years), brother Ryan (1 year), and Kevin, my husband and James’s dad, we have all been singing songs on Anna's karoke machine. The use of Makaton and learning the signs to songs has been absolutely amazing and means James can join in and be fully involved in family fun activities.

James and RyanThe use of Makaton also helps James’ siblings Anna and Ryan be able to communicate and play with James and learn what he is asking or telling them. Also James’s aunts, uncles and grandparents are all beginning to pick up and use Makaton now on a daily basis to communicate with him. We also use Mr Tumble, Singing Hands and YouTube to learn Makaton signs and songs.

To someone starting out in learning Makaton, I completely understand how overwhelming, scary and even frustrating it can be having to learn this form of communication, but the impact Makaton will have on your family life will be truly amazing to help you understand what your loved one needs.

It is also a skill you will carry with you when you meet other very special people who uses Makaton in you day to day or work life.

Author

Annemarie McBride

3rd July 2019

At home

Tom's Makaton story
29/11/2018

Tom's Makaton story

Laura giving Tom a piggy back

Laura giving Tom a piggy backOur Makaton journey started in January 2014 with five line drawings on one A4 piece of paper: book, bath, ball, teddy bear and chair.

A couple of months prior to this, Tom had been fitted with a tracheostomy, an artificial airway tube in his neck to help him breathe properly.  The tracheostomy tube meant no air passed Tom’s vocal cords and as a result he was completely silent and incapable of speech.

We had spent the last few months in hospital, and it had been a gruelling time.  This took our total time in hospital up to around 11 months... Tom was 14 months old.

Colin holding baby TomAlthough the news about his speech was difficult to take and we had a lot of concerns, we were just so glad to be getting to take our baby home safely.  So in amongst juggling all the medical care at home, we started to sign these 5 things whenever we could.

Months went by.... Tom had severely delayed development as well as a long list of medical complications, so it was difficult to tell if we were getting any feedback from the signs. Then in September 2014, his dad, Colin, signed Bath and Tom clapped his hands and smiled. He recognised the sign!  All three of us signed and clapped and hugged and cried.

The following week Colin and I went on our first full Makaton training, learning Stages 1 and 2 of the Core Vocabulary.  The new signs and symbols felt overwhelming at points, but the tiny bit of progress we had seen was just the encouragement we needed. We also got to meet our local Makaton Tutor, Linda Macleod, who shared her personal experience with Makaton and the positive impacts it had on her and her family.  We were inspired!

All of this gave us such motivation to really embrace Makaton and all it could bring to Tom and us as a family, and it came just at the right time as our journey was about to get more complicated.

During our time at home, we had started to suspect Tom may have a hearing impairment - given his health complications, he didn’t undergo the usual newborn screening, and subsequent tests were inconclusive.  His long time in hospital intensive care beds meant his development was progressing differently to the average child, so even audiology and speech and language were confused.

It was agreed Tom should undergo an Auditory Brainstem Response (ABR) test to confirm, which would be performed under general anaesthetic.  The date was booked for mid October 2014, just a couple of weeks before Tom’s 2nd birthday.

We went to hospital and once Tom was asleep, audiologists attached specialist probes to his head which would measure his response to sound while he was sleeping through his brain waves.  Tom also underwent an MRI scan of his ears and head to help assess him.

A few hours after Tom had woken up our audiologist came to see us… the news was not good.  Tom had been diagnosed with profound bilateral sensorineural deafness; they had tested him up to 90dB and there was no evidence of hearing in either ear. 90dB is the equivalent of an airplane taking off or being in the front row of a concert, so Tom was likely in a completely silent world.

A follow up appointment to review the MRI scan results confirmed the audiologist suspicions – Tom had missing auditory nerves and underdeveloped inner ears, which meant the sound signals were not reaching his brain.  This meant that hearing aids would offer no assistance and cochlear implants would be very unlikely to work.  We were devastated.  And hugely concerned about how Tom would be able to communicate with us, or we could help him understand some of his future medical treatments.

Tom riding a tricycleInitially some speech and language professionals were shocked by the diagnosis and rather pessimistic about the outcomes. With only visual cues, it was much harder to learn signing, plus Tom had other learning difficulties.  No wonder it had taken so long for him to pick up even one sign.  We were told to be realistic about his low chances of being able to sign or understand.  It was another devastating blow, and felt so cruel given all the other complications Tom was dealing with so bravely.

For Tom’s 2nd birthday we had a massive superhero themed party.  We tried to focus on how well he was keeping and the fact we were able to celebrate at home; his 1st birthday was spent in intensive care.

As I watched Tom respond to the lights and people around him, and the feeling of the music through the speakers and dance floor, I thought back to our Makaton training and Linda’s stories of her journey.  Colin and I discussed it and talked to our speech and language team again – we were going to put our energies and faith into Makaton.

So far progress had been slow, but at least the was some progress. Our speech and language therapist Georgina was very supportive, as was Linda.  With their support, as well as our amazing local mainstream nursery Larbert Day, Tom was surrounded by Makaton, with additional visual cues to help support his learning such as photos and symbols.

Sign sharing sessions were arranged for our carers at home who helped look after Tom’s medical needs, other family members attended training, we took out a subscription to the MyChoicePad app; and Mr Tumble, Dave Benson Phillips and Singing Hands DVDs were all on repeat at home.

Slowly we learned more vocabulary and felt our confidence grow.  And Tom grew with us… he continued to respond to more and more signs, and we could see him looking at our hands as much as our faces to understand what was going on.

As part of our bedtime routine, I had begun signing “goodnight Tom, mummy loves you” after we learned it at our training in September 2014.  9 months later in June 2015, I tucked Tom into bed and signed as usual, and this time he looked up at me and signed “love” back to me by tapping both his hands on his chest.  I cried out with joy and scooped him back up out of his cot, sobbing and kissing him.

TomIt had taken almost 18 months but my Super Tom had shown me he could learn to sign!

Now almost five years later we use over 300 signs and Tom signs over 50, and in sentences.  His most commonly used ones are iPad and bike, his two favourite things!  Makaton has given Tom a voice and a way of telling us what he wants and needs.  Without it, he would be a very different boy.... frustrated and stuck in a silent world. Now he is a bright, sociable and curious 6 year old with often very strong opinions on what he does and doesn’t want to do.  It’s also been hugely beneficial from a medical point of view - we have been able to explain to Tom when we are going to hospital, and what was going to happen, as well as him telling us when something wasn’t okay.

Tom has complex epilepsy and had  a very lengthy and severe seizure in December 2016.  As we waited for him to come round, the medical team had told us they were unsure of what to expect in terms of long term damage.  Tom opened his eyes and looked around, unsure of where he was. I was able to explain the nurses were looking after him and he was safe in hospital.  I asked him if he felt okay and he signed back “sore”, holding and moving his hand above his head.  “Do you have a sore head?” I signed back to him, and he responded “Yes”.  I grabbed him and gave him a big cuddle and asked the nurse to get some pain relief.  Despite such a prolonged seizure, he was able to communicate and be comforted, which was one of the key things I had been most worried about when we first got his hearing diagnosis.

Tom’s reaction to the CBeebies Makaton-signed bedtime story was just magical to watch.... I wasn’t expecting him to be so engaged but his face completely lit up and he was totally enthralled.  He seemed surprised to be seeing someone on the TV signing just like him on a programme he recognised... he kept nudging me and looking to make sure I was watching it!  There are a lot of areas in Tom’s life where it’s difficult for him to be included without a lot of support.  It’s wonderful CBeebies are using Makaton and we can’t wait to see more stories and programmes with it.

The video going viral was a surreal experience - I didn’t even know my husband Colin was filming at the time!  I had asked him to take a photo when I saw Tom’s reaction - it was an hour or so later when I discovered there was a video, and when I watched I knew I had to share it.  I so wanted to let CBeebies see how much of an impact it had made.

It was also really important to me to let Rob Delaney know how much we appreciated it as well.  We had followed the story about Rob’s son Henry, who also had a tracheostomy like Tom.  I was really moved by the piece Rob wrote about Henry, and the mention of their family journey with signing.  It felt really special for me as a parent of a child with similarly complex medical needs to see a fellow parent, someone who knows the personal and profound impact the Makaton language can have, signing the story.

The subsequent flurry of news and radio coverage was amazing!  I so enjoyed talking about Makaton and sharing a little bit of our story.  If it encourages one other family in the way we were encouraged in the early days, then it’s all totally worth it.

In the future I hope to do more training and eventually qualify as a Makaton tutor so I can keep spreading the word (and signs!) of how much it has brought to our lives.

Laura, Tom and Colin wearing Santa hats
Author

Laura McCartney

29th November 2019

At home