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Barbara Jamera

The staff were unhelpful and saying how busy they were and I just said: Sorry, but I can’t switch his autism off

Barbara Jamera is mum to Kieran who is on the autism spectrum and has severe language impairment

Up until the age of 18 months Kieran Jamera had been developing normally, going through the usual stages of sitting up, babbling and counting.

And then, he just stopped.

Although others tried to reassure his mother Barbara, she just knew ‘something was not right’. A referral was made by the GP to the community health visitors to investigate and provide appropriate support. 

One of the things that they suggested was to test his hearing. ‘They tried to perform an audiology test but Kieran wouldn’t let anyone touch his ears. I wasn’t concerned because I knew that he could hear the sound of the washing machine beeping or the rustling of keys downstairs when he was upstairs.

‘Kieran was never vocal so the only time you’d hear him was when he would cry. And, my God, the boy would cry.’

In fact, Kieran cried every time they went to new places, or every time someone new came into the house. ‘We stopped visiting people, and we stopped people coming to see us, except for a few family members,’ Barbara said.

It was only when Kieran went to a nursery, in Coulsdon, Surrey, where the family were living, that someone suggested autism. ‘We had heard of autism before but I had never researched it,’ Barbara said, ‘and I could recognise some of the things he was doing… For example, he would see something on television and rewind it to the same point, even if it distressed him, rewind it and then he would cry again. He had no eye contact.’

Kieran started a new nursery school where two members of staff were trained to deal with children with special needs. His biggest fear was a big cardboard drawing of a sunshine. ‘He would scream and be petrified whenever he saw that picture, until it was taken down,’ Barbara recalls.

Still Kieran was non-verbal and he played only by himself. He knew words like Daddy and Ian but no comprehension that Ian was Daddy. He went from having a ‘colourful’ diet to eating only Weetabix, chicken, grapes and Ribena for two and a half years.

After the family moved to Jersey for Ian’s job as a theatre practitioner at the General Hospital in April 2013, Kieran started attending St Saviour’s School. The staff there pushed for more tests and Kieran eventually received his diagnosis when he was five: Autistic Spectrum Disorder, Severe Expressive and Language Impairment and Sensory Modulation Disorder.

Barbara has found that meeting other parents of children with autism has helped greatly. She says it was ‘the best thing ever’ when one day after school a father introduced himself and promptly handed her his wife’s mobile number, advising her to link up and be introduced to Autism Jersey. Not only have they remained great friends, but the family has found huge support from the charity. Under the Short Breaks Service, they get three hours every weekend where Kieran gets taken out by his support worker, giving much-needed time to Barbara and his older sister Ruth (12).

Kieran is obsessed with kitchen gadgets and wants to open everything, so his fascination draws him to washing machines, microwaves, dishwashers, vacuum cleaners and hobs.

‘I started being confined to the house, I couldn’t go shopping with him,’ Barbara said. ‘He used to throw himself on the floor a lot, and people would tut. You could hear them: “You need to discipline your child.”

‘I used to cry a lot. It would get to me, and I used to want to say, try to walk a mile in my shoes. 

‘Even when he started Reception at St Saviour’s School, I could hear him screaming when I left and I thought, oh my God, this is my child. What do people think? What are they saying?’

As is common in children with autism, Kieran has no awareness of danger and will run into the road without a thought.

Barbara describes daily life as exhausting.

‘It’s tough, the meltdowns, the screaming, the kicking, the biting…’ She recalls one time when they had boarded a plane and just before take-off, Kieran took his seatbelt off. ‘The flight attendant was asking me to sit him down and I was saying, my son is autistic, can you not see that I am trying? I was so glad the flight was less than an hour. I had to hold him down the whole time. You could hear the tut-tuts and I’m thinking, really, do you want to live my life until we land?’

Another time, flying back through Gatwick, the family were running late and asked for special services, when she was met with the comment: ‘He doesn’t look autistic.’

‘Is there a look for autism?’ she said. ‘He was getting distressed and not standing still. The staff were unhelpful and saying how busy they were and I just said: “Sorry but I can’t switch his autism off.”

‘I was so irate… Just because he can walk doesn’t mean he can queue.’

(After complaining, the family were given an apology and assured that staff would be further trained.)

Barbara recalls an episode in town when Kieran threw himself on the ground and she heard a woman comment to her child how ‘ill-mannered’ he was. ‘I turned around and said: “Is your son autistic?” And she went “No.” “Well, mine is.” “Oh I’m sorry…” and I said “No, don’t be sorry but please don’t be so quick to make judgments.” And I had tears in my eyes.’

The challenges, says Barbara, are daily and even close family find it difficult to understand. ‘We lost a lot of friends. Some things will change but it’s not going to go away. I wouldn’t wish it on my worst enemy.’

It has even led her to question her faith and she admits it can strain even the strongest of relationships. ‘Every day as a parent of an autistic child, you’re always drawn into thinking ahead, what happens when I’m not there? I wouldn’t want Kieran to be his sister’s responsibility.

I am eternally indebted to the kindness of Autism Jersey

‘Now, I don’t hide the fact that my son is autistic. This is how he is, you have to accept it and get the rightful support. It’s not going to go away. You’ve got to change your way of thinking, even if that is not easy.’

Kieran has recently moved to Mont à l’Abbé School, where he seems to be settling better than anticipated. Barbara says that weekend support with Autism Jersey’s Short Breaks Service frees up time to do things most people take for granted.

‘When Kieran is out, I can sit down and just have a cup of tea, or whizz to the supermarket or take a nap. It’s the smallest things that matter. It meant we could breathe, you know, and plan a part of the day.

‘If Autism Jersey hadn’t been there, probably one of us would have lost the will to live. They have definitely made a difference to our lives. I am eternally indebted to their kindness.

‘Sometimes I have phoned them when I’m a wreck and you hear “Don’t worry, we will sort this.” Sometimes I just need to pick up the phone to a member of staff and say “I just need to cry” and they will say come round and have a cup of tea. No one is judging you. They are so friendly, which is such a welcome relief. Why can’t everybody be like this?’

 

*If you are inspired by Barbara’s story, please support us so that we can continue to support adults and children on the autism spectrum.

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