The rollercoaster of being a parent of a child with special needs

I want to share with you my experience and learning from being the mother of Joshua, who is now 14 years old. Joshua’s problems were diagnosed when he was just 4 days old and so there have been very few days in his life, that we, as his parents, have not been acutely aware of the difficulties that he faces every day. The purpose of this blog is to share with you my experiences and where we are today and hopefully, you will find some comfort or something useful in what I have to say that you can use in your own lives. I am not preaching or saying that I have all the answers, but I do have a lot of insight into our journey so far. I wish that I had received some guidance from another parent when we were setting out on this adventure, but we did not have, so I hope to fulfil this role for you.
Things that I really wish I had known at the outset:
1. That you need a decent social worker on side to help you to navigate the ‘system’. We were not assigned a social worker when he was a baby, which seems to be the biggest failure in the system : in an ideal world we would have been allocated a social worker on day 4 of Joshua’s life when he received his life changing diagnosis. In fact, it was my mum who suggested that we should have a social worker, when she was allocated one when caring for my father who developed vascular dementia. I had always thought that ‘social workers are for families with problems’ and she put me straight ‘Emma, you do have a problem’ .So I set about seeking a social worker and Scott came into our lives in 2009, when Joshua was 8 years old! We already were in receipt of Disability Living Allowance as we had an excellent Health Visitor as soon as we came home from Special Care , 11 days after Joshua was born. She had told me to complete the gruelling form while drinking a glass of wine, writing it about Joshua’s worst day, seal it in an envelope and never think about it again. This was good advice, except that it needs to be renewed regularly and so there should be an extra step, take a copy of your application before sending it off ,so that you can compare notes as your child gets older.
Scott has been helpful to us in terms of our tribunal for changing schools, organising respite care, supplying Direct Payments and attending our Annual Reviews at school to offer continuity.
Whenever I meet a parent now who does not have a social worker, I urge them to get one as life as a parent of a child with special needs is difficult enough, without anybody fighting your corner. Sadly I hear that not everyone’s social worker is as helpful as Scott has been for our family, but that should not be a reason to shy away from Social Services.

2 thoughts on “The rollercoaster of being a parent of a child with special needs

  1. You have both been amazing parents and, despite Joshua ‘s many battles, he is a fighter and beautiful inside and nd out to boot! This blog site, I hope, will be a great supportive forum. For you too x

    Liked by 1 person

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