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