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Meet Jacob, Ellen's Dad.

Jacob is a single father of two children aged 7 and 2. His wife Annie left the family home shortly after their younger son was born. Their eldest child Ellen has cerebral palsy.

Annie gave up work when Ellen was born, and managed the medical assessments and then her condition for the first 5 years of her life. Jacob worked to provide the family with an income, and as a result he had missed a lot of medical and support appointments and when Annie left, Jacob found that he did not know some of the details of Ellen’s care needs.

It was a steep learning curve and one that cost him a lot of friendships, as he was no longer able to put the time in to them. This has left Jacob, who used to have a lot of buddies and do a lot of sports, isolated.

 

Jacobs's goals

  • For Ellen to be safe, happy and to develop well, and for my son to get what he needs too.
  • To develop the knowledge I need to support my family. I don’t want to be an expert, but I want to know that the teams around her are doing what they should be!
  • Sometimes, my goal is just to get through the day. There are more good than bad days now, but it’s been really really hard.

 His challenges

  • Balancing medical appointments, family commitments and work – there is literally no time for anything else.
  • New professionals always assume that I’m just ‘standing in’ for Ellen’s Mum – I feel patronised and sidelined often as though I’m a secondary parent.
  • Understanding who does what – it’s a nightmare to work that out and personnel are always changing.
  • As a single dad of a disabled daughter and a young son, we face a lot of practical challenges, e.g. around single-sex spaces like changing rooms and toilets. I feel like this is easier for women – and I worry about how to manage this as Ellen gets older.
  • Life is a blur of work, pick ups, and medical appointments – it doesn’t leave a lot of time for fun.

His tasks

  • Trying to keep up with all of the reports from professionals – Ellen sees a physio and a speech therapist quite regularly and her school do some work with her as well, but I often don’t know exactly what they are doing. Sometimes I feel like I should follow it up so I know more, and other times I just hope that the professionals are doing their best and I can trust them.
  • We have physio and speech therapy to do at home as well, as well as homework from school.
  • I feel like I’m constantly at the chemist – if it’s not a repeat prescription, it’s for a cut, graze or scrape because Ellen often falls over.
  • I sometimes worry about when I should be taking her to the doctors – it can be hard to make that decision by yourself, when you don’t have anyone to run it past.

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