Rebekah and Caroline – Living with dyspraxia

Rebekah had a traumatic birth. She was born with her umbilical cord wrapped around her neck and wasn’t breathing when she came out. After the initial panic though, there were no real concerns for her. The only sign that something might be wrong was that Rebekah never really babbled as a child, but Caroline thought it may be a genetic trait. “My aunt didn’t talk until she was five and she hasn’t stopped since!” It wasn’t until Rebekah went to nursery that her condition was recognised.

Rebekah has moderate learning difficulties and profound verbal dyspraxia, which means she finds it hard to make sentences and hard to remember words. She can’t sequence things, which also means she can’t grasp the concept of time, so any event she talks about is last week. There is no obvious pattern to her thought process, she will just talk about unconnected things. She also has slight physical dyspraxia, which means her brain knows what she must do to move her body, but the messages to the body parts gets muddled up.

“You always feel on edge, you have to say ‘this is Rebekah and she has special needs’”.

I ask Caroline about other people’s prejudices towards Rebekah and if this presents problems. She does find day to day encounters with strangers hard, because people do judge her and Rebekah. “You always feel on edge, you have to say ‘this is Rebekah and she has special needs’”. She remembers one time when Rebekah was younger and singing in the school concert. “She couldn’t say the words, she’s tone deaf and has one volume, which is loud. I was blubbing my heart out as I thought it was fantastic and I could hear other parents saying, ‘what is wrong with that child?’. You get that all the time.” She finds solace with other parents who have children with similar needs, and the various disability sports groups that Rebekah is involved with offer that informal support network. “It’s like therapy; we all chat together. You don’t feel like you have to justify anything at all”.

Caroline, and her husband Matthew, have made a conscious effort to treat Rebekah and her older brother the same as much as they can. They are disciplined the same and participate in family activities together; the family go skiing every year and run the 5km Park Run every Saturday. There are, of course, some ways they are unable to be treated the same. Rebekah wants her own house key and although her brother at age 12 could be responsible in the house by himself, Rebekah is not able as she wouldn’t be able to react to an emergency. “There could be a fire (on the stove) and she would just sit there and think it’s getting a bit warm, but not know what to do”.

The Special Olympics is a multi-sports event for athletes of all ages with intellectual disabilities.

For a girl of 12 though, Rebekah has already achieved so much. She competed in the Special Olympics in Sheffield in the Summer and was one of the youngest team members from the Eastern Region. The Special Olympics is a multi-sports event for athletes of all ages with intellectual disabilities. Rebekah entered three swimming races and won a bronze medal in the backstroke. I ask her how it felt to stand on the podium. “Happy. Sad”. Happy for the obvious reasons but sad because she is very competitive and wanted to win the gold.

Another benefit of training with the Special Olympics team, which is based in St. Albans, is that the team have a good social life. They go to concerts and participate in different activities, so as Rebekah gets older she can hang out with others who have intellectual disabilities like her. “Nick,” interrupts Rebekah. Caroline sheds some light, “She met him and had a bit of a holiday romance (at the Special Olympics)…she talks about Nick a lot”.

Caroline has recently started working at the school and has now become use to the normality of sheep walking through the corridor.

Rebekah now attends a Special Needs school, which has considerable grounds and is resident to numerous animals. Rebekah tells me about all the animals; rabbits, a snake, insects, a chameleon, donkeys and sheep. Her favourite animal is the red labrador, Maple. Caroline has recently started working at the school and has now become use to the normality of sheep walking through the corridor, a parrot perched on the shoulder of one of the staff members as he goes about his daily life at the school and a school nativity play with real animals. “The children don’t even bat an eyelid, no-one does,” laughs Caroline.

In some ways Rebekah is just like any other 12 year old. She argues with her older brother over incidental things, winds her parents up playing loud music (its Bars and Melody at the moment, which she plays “24/7” according to Caroline), participates in sporting activities and falls in love on holiday. But Rebekah’s journey to adulthood and independent living is full of a lot more hurdles and anxieties for both her and her family than the average teenager and their family would ever face. However Caroline seems to face these anxieties in a very practical way, and as she says, “you do have to have a sense of humour if you’ve got a special needs child”.

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