By Rosie and Jo’s mum.
Life as a parent of a child with additional needs is a series of challenges and our other blog posts are testament to the number of battles we are forced to fight.
Some of the battles are for things we never wanted in the first place. That might sound strange to some people but I think a fair few who are in the same boat will know exactly what I mean without reading another word.
I remember the first time I realised that Rosie had a neurodevelopmental disorder. I was talking through her developmental history with a CAMHS clinical psychologist. He skilfully led me through the story of her life, very patiently, allowing me to gradually put the pieces together and work out for myself that I was describing an autistic child. I had literally never crossed my mind before. I left the appointment in shock, called in at Tesco on the way home, left without buying anything and then spent six months unable to allow the word ‘autism’ to pass my lips.
Very soon after this revelation, it became clear to me that a formal diagnosis was the key to Rosie getting the educational support she needed. So, while still processing the information and its wider implications for Rosie and our family, I also had to begin work to help gather the evidence that a diagnosis was appropriate. This became somewhat of a battle because the school staff were determined to prove us and CAMHS wrong.
When the diagnosis was eventually confirmed by a panel of clinicians, my emotions were in turmoil. Part of me was elated that she would now have access to support that was crucial to her education and part of me was in bits because this was confirmation that she had a disability and the challenges she was facing weren’t going to go away.
A friend persuaded me to apply for DLA and the outcome brought the same conflict of emotions. Filling in the forms felt like a betrayal and forced me to accept that our life had yielded to her needs in many ways without us even realising. It hurt to see her difficulties acknowledged in writing but, at the same time, the money she was entitled to would help us to give her what she needed.
Next came the statement of SEN. This was essential to the right school placement but was also a collection of descriptions of (and comments on) what she couldn’t achieve and how much support she needed.
Very soon afterwards we started on the emotional rollercoaster that was the same process for Jo.
Over the years, every time someone has acknowledged either of my children’s needs and agreed that they qualified for support, I have felt a double-edged sword pushing a little deeper into my flesh.
The one example I will never forget was the day I received an email from the LA’s solicitors saying that they conceded the appeal to the SEND tribunal and would be funding a place at residential school for Jo. This was a huge victory and one we had been hoping and praying would be ours for months, yet it was also confirmation, not only that no school in our county could meet our daughter’s needs, but also that I would have to get used to life without her at home in the evenings during the week. This was a huge relief and cause for celebration but terrifying and devastating at the same time.
I think this is one of the biggest challenges for me about having a child with additional needs. So many of the fights we have are for things we never wanted in the first place.
Winning isn’t ever going to feel like a victory when it comes as an acknowledgement that your child needs something extra just to have a chance of equality, especially on the occasions when all you have achieved is the possession of a document you can use to force people to do what they should have been doing already.
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