I am poised to contact the press in the hope they may do a feature, primarily to raise our profile and appeal for some willing volunteers to embark on personal challenges or to help with fund raising. There is one thing worrying me. We home-educate Mia. It is a contentious issue for some. I am worried people will think ‘Why should I help you, when Mia could get the help she needs in school?’
The short answer to that is that Mia could not get the help she needs in school. The initial reason for home educating Mia (though we have found many advantages to this approach since) is that she was deeply unhappy, and her needs not well met, in nursery. Of course, at that time none of us fully understood Mia’s condition. But we did not feel supported in trying to obtain an assessment or reach any kind of diagnosis or plan of action for treatment. Instead, she was given the same attention as any other child, which left her isolated. Meanwhile, the other children naturally found her behaviour odd, and were often unkind to her.
Now that we do know Mia’s diagnosis and prognosis, we also know that Mia is not a suitable candidate for a special school. She would have a statement and be in a mainstream
school. For some children with special educational needs, mainstream school can meet their needs very well. This would not be the case for Mia. Once again, she would be isolated and prone to bullying. She is hyperactive and strong-willed. Her behaviour can be very challenging, especially when she is struggling to understand what is happening around her. She would find a quiet-working classroom setting oppressive, and a noisy, active one overwhelming; and the school would find her behaviour very disruptive.
I go to several places where special needs parents come together, and have yet to hear a happy tale of a wonderful school, with appropriate funding and resources to suit the child’s needs. I am sure they do exist, but it is not the norm. I overheard one parent talking about how the headmaster would not meet with her to discuss her concerns as he felt the child’s needs were already being met.A friend of mine asked at her daughter’s school if they might do some fundraising for Mia. The staff met in the staff room to discuss it, and decided that as they were unable to adequately meet the needs of children in the school that have speech and language needs, they felt it inappropriate to fund raise for a child not registered there. So telling. I do help it gave them some ideas though – fundraising for resources?! Mia is an unusual case as she has huge potential to do well, but her disability is currently very pronounced and afflictive. It is estimated that 1 in 3 children in school have some sort of speech and language problem, most less marked and so sometimes unnoticed and undiagnosed.
The system fails so many children. That isn’t a political statement against the current government, it has been thus for many years. Mia has a severe difficulty. Her difficulty is highly treatable, but that treatment needs to be individual to suit her character and needs. It is the difference between being able to lead an independent life, and needing support and intervention as an adult.
Mia has had some help from the kind of NHS speech and language therapists who work in schools. It was not specialised enough, and it was not intensive enough. She has made more progress in the last few months working with Julie Ansty at The Talking House than she has in the last few years. It takes my breath away a lot at the moment! The fact is, Julie’s approach works. TalkTools and Prompt work for Mia. We have just started Fast ForWord, and are expecting that to help a lot too. Conventional therapy, that which is available in schools, has not really worked for us. Nothing has worked much until now. I don’t want to spend all my time and energy fighting to get NHS therapy for Mia, when I know that in the end, even if I win that fight, the therapy will be less effective than the therapy she is currently receiving privately. I want to do everything I can to get my daughter where she needs to be. I am not the first parent of a special needs child to turn away from a failing system and take matters into my own hands. I am hoping people won’t judge me for that.