Jessica is six years old and lives with her mum Emma, dad Mark and her older brother in Hemel Hempstead. Jessica has autism which means that daily life can be challenging, not only for Jessica, but for her family. In addition to this, as mum Emma explains, “I have Multiple Sclerosis [MS] myself which brings its own challenges and can make family life hard.”

Daily life for Jessica and her family

Emma tells us that due to Jessica’s condition “we try to keep a steady routine at home.” Jessica currently attends mainstream school, and is going into Year 2.

“She manages mainstream school at present but with lots of additional SENCO support.”

SENCO refers to a Special Educational Needs Coordinator – a teacher who is responsible for special education needs in school. “It can be a battle to get her to school most days.”

“Jessica has meltdowns which can be violent, for both herself and for us. She struggles with group activities and we’ve had look into getting 1-to-1 support for things like swimming lessons, which is the only sport she can manage.”

“We attend speech and language therapy once a month to support her language development.”

Though daily life can present difficulties, there are plenty of things that bring Jessica joy. “Jessica loves to draw and do arts and crafts. She enjoys computer games and she is really creative when it comes to games like Minecraft. She also loves music and sharing stories.”

 

Challenges for Jessica and her family

“We are restricted with going out, especially if I’m on my own with the children because due to my MS I haven’t got the energy or strength to deal with Jessica on my own.”

One of the most challenging aspects for the family is when Jessica runs off. “I’m learning the triggers and can feel when she might go. It can happen when I collect her from school but it’s not always possible to know when she will run away. I have to know where she is at all times, and because of my own mobility issues I can’t run after her. I need to prevent it before it happens. Especially as I use a wheelchair 50% of the time.”

“My own health was a factor before Jessica was born and it’s a challenge to manage her behaviour alone. This has meant my husband, Jessica’s dad, has had to drastically reduce his working hours to provide care for us both."

"Jessica’s brother, who is eight, also provides support and care for both Jessica and myself.”

The family are the main providers when it comes to support for Jessica. “Jessica is unable to cope with any holiday clubs or groups so all care is given within our family unit. I have completed a short course on autism with pathological demand avoidance through a local charity.”

 How we helped

Emma heard about Family Fund through a support group on Facebook, and they first applied in 2019. “We received a grant that helped us purchase a special needs bike trailer that can be attached to the back of a bicycle. It can also be used as a pushchair and has been adapted to be towed by my electric wheelchair.”

How it’s made a difference

“The special needs bike trailer means we will be able to get out and about as a family. It gives Jessica a place to retreat to when it all gets too much. It also supports her walking which is tiring as she walks on her tiptoes.”

The bike trailer also allows Emma to go out with Jessica alone. It can keep Jessica safe and reduce the risk of her running away. “It means I can take Jessica out by myself as she can use the trailer whilst I’m using my wheelchair. It gives us a lot more freedom to enjoy life.”

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