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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It Must Be Mum 
I know just what you mean! I started to suspect my son was different when he started nursery, and I could compare him to other children, so his diagnosis (at age 4) was not much of a revelation – almost a relief! – now we could begin to understand and to help support his special needs. He has high functioning autism and “symptoms of ADHD” and has spent several years in an excellent mainstream primary school which has been very supportive. I thought ‘high functioning, clearly very intelligent, with just a little support my child will be going to university; this isn’t really a disability, more of a difference’. However, over time it has become clear that he has complex needs and requires more support than any mainstream can provide; I think he would have been excluded by now from the majority of schools. We have had to search high and low for a specialist school that could not only support his autism, but also his academic ability, to give him the greatest opportunity to move forward in life. We think we have finally found one, close to home (!) and are meeting them this week; the LEA are willing to fund his placement; they have outstanding Ofsted reports and everything looks too good to be true. The fly in the ointment is that my son does not want to move schools; he is happy where he is, and since starting ADHD medication his behaviour has improved markedly, so that he is looking forward to going to school full-time – he has been on half days since he started Year 4. I know that he is going to feel terribly betrayed and I just hope that this won’t be a huge setback for him; but regardless of how he is doing in primary school (and he is falling badly behind on the curriculum) my biggest concerns are for when he starts secondary in two years’ time. The specialist school we have found takes children all the way through their GCSEs and so I feel that we absolutely have to secure him a place now, when one is available, and weather the emotional storm. If they are truly a good school, they will be able to help him through it; but how I wish we didn’t have to do this at all. I am sure we are doing the right thing, but at the same time I hate having to make a decision which will cause him distress, I worry that things may not turn out as we would wish, and I am sad that he cannot cope in mainstream education (which usually has the best academic resources) as with intelligence alone, there is nothing he cannot achieve – but his special needs are holding him back. It is hard to be optimistic for the future, but I am determined to give him every chance and open as many doors as possible. My main goal is just for him to be happy, but that is a complex balance of present and future needs, and it is impossible to be clearly foresighted. All we can do is hope and try!
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It sounds like it will be hard to move him but he will, hopefully, thank you in the long run.
There is nothing like the feeling of watching your child thrive in the right provision after they have struggled for years.
Fingers crossed for a smooth transition and good outcomes for your son.
University may not be a pipe-dream after all. It’s amazing what our children can achieve given the right support.
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