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Jenson’s story

Jenson is three years old and has just started attending the Kids Family Group in Birmingham. His parent, Rhian, shares their story.

Jenson’s early years

Jenson has something called Mild Ventriculomegaly. He was born at 38 weeks by a planned caesarean because of his mother’s renal issues and kidney transplants.

At his 24 week scan the doctors discovered he had enlarged brain ventricles which caused fluid on his brain. Doctors kept a very close eye on him and got lots of extra scans and a foetal MRI. His ventricles were found to still be enlarged when he was four months old, and the health visitor came out every month to measure Jenson’s head circumference.

Jenson did say a handful of words but seemed to regress when he was 14/15 months old and we noticed he wasn’t progressing in most areas of his development. There was limited response to his name, he said no more words, he got very distressed if someone disturbed his building and playing, and he did not want to communicate or socialise with other people (adults or children). There were other signs, like only using his fingers to eat and filling his mouth with food until he began to choke.

The neurologist did Jenson’s two-year check and reported that he had the visual comprehension of a 12 month old. He was completely non-verbal and still is. Jenson then got referred to language and speech therapy, to various support services and to the Kids Birmingham Group. Jenson’s community paediatrician has also referred him for an autism assessment, and we have very recently completed and sent the ASD assessment questionnaire back.

Our experience at Kids

So far we have only attended two sessions at the Kids group so haven’t noticed much difference in terms of Jenson’s development. Behaviour-wise, Jenson does appear to be happy and will attempt many of the activities set-out.

Jenson is a child who isn’t fazed by anything and very much lives in his own world, though every now and again he does look at the other children around him and is content enough to play alongside them. He is also aware of when mum and dad are there, and it’s nice to see that he does actively look and seems to be slightly aware of his surroundings when recognisable adults are around.

Jenson finds comfort in the tail and ears of his favourite soft toy which is kept with him at all times, and is always needed in times of distress and/or tiredness. He loves spinning, jumping, and galloping around a room more than he likes walking, and he loves to view the world upside down!

It’s lovely to witness that he appears to have confidence in the setting and isn’t too overwhelmed with a small amount of his peers. It’s all about taking baby steps with Jenson and introducing situations a bit at a time instead of throwing him in at the deep end with a crowd of children, and I think the Kids Group allows him to move and interact at a pace he seems comfortable with.

Our hopes for the future

In the future we hope Jenson can progress at his own pace in a comfortable environment – whether in nursery or at home – with a key person’s support. We hope he finds his own way to communicate his wants and needs in his own way that meets his requirements without distress or frustration. Most of all we want Jenson to be loved, understood, respected, and accepted on his own individual terms.

Jenson is photographed from above. He is standing on the sofa with his hands on his hips.

Jenson is sitting on a car seat and is holding a blue water bottle.

Jenson is wrapped in a Spiderman blanket. He has a pacifier in his mouth.

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