3 years so far, 3 years that I’ve been in a constant battle for understanding and awareness of my child’s additional needs. And I talk to many parents on a daily basis that have been fighting for a lot longer than this.
After I saw on Twitter that there had been a lot of debate on a certain article published by the TES and Guardian, I thought I’d best give it a read.
Straightaway whilst reading through it sparked many thoughts and comments about the journey we’re having with our eldest child, and also my own experiences of the education system.
The first article I read was titled:
“Its unforgivable that so many children are misdiagnosed with learning difficulties, diverting help from those with genuine need.”
From TES 24/02/17
What makes me so compelled to explain myself is that I often stop and think that I may be perceived as a ‘pushy parent,’ instead of a parent who only wants the best for their child, it has stopped me from speaking out in the past and even though I’m now seeing traits of SPD in my youngest child, due to the negative perceptions and receptions I’ve received in the past 3 years, I’m now too afraid to mention anything, I’d rather wait until a professional approaches me ‘if’ they notice something in her. This is wrong, I shouldn’t have to feel like this, with my eldest I just couldn’t stand by and watch her suffer after being told repeatedly since she was 18-months old that “she’ll grow out of it.” Or her sensory seeking behaviours we’re “normal for her age.”
The one huge factor in having to be in constant ‘battle mode’ is that my child is a huge ‘masker’ of her difficulties at school, and schools seem to be the place where all the assessments go on, they never ask to come in to observe her at home where she feels most comfortable in a environment with both myself and her father, her main care givers, who she knows will love her unconditionally. So what did I do? I sent an 11-page document explaining and detailing how our daughter presents at home to the ASD assessment team as she is currently at the start of an ASD assessment, I do wonder if they see me as a ‘pushy parent’ but I’m a huge believer in always looking at the bigger picture and ‘just because you can’t see it, doesn’t mean it’s not there!’
I’ve had so many battles with being believed with our daughter as she displays ASD traits but can give eye contact to the people she is most familiar with, and she can engage in imaginative play and this baffles professionals, (I’m exactly the same,) I will always stand by that the ASD spectrum is so wide that not every child ‘doesn’t give eye contact,’ etc they need to look so carefully at each child as an individual. I’ve researched PDA (Pathological Demand Avoidance) as our daughter scores highly on the PDA scales on the PDA Society website, but actually getting professionals to accept this is a huge battle in itself, even though I’ve clearly identified these traits in my child.
One statement that really did hit a raw nerve with me was:
“Almost three-quarters of teachers (72 per cent) believed some parents wanted their child to be labelled as SEND, even though there was little objective evidence to support that belief”
I would never just ‘want’ my child to be labelled as SEND, I advocate for her for one HUGE reason, and that is to prevent her from going through the same difficulties as myself through the whole school education system, because no one looked at the bigger picture and I was just left to ‘get on with it’ and my mental health suffered so much as a result.
I was labelled as ‘Painfully Shy’ at both middle school and high school, did they not notice that I was not giving eye contact? That I never spoke up in class? That I was a loner on the whole but hid behind ‘friends’ that I thought were protecting me? That after these ‘friends’ had legged it out at lunchtime (and I didn’t like breaking the rules,) that I hid away in the school library for safety? Did they never notice that I was chewing the skin off my palms and all my fingers and biting holes in my jumpers because I was that traumatised by the sounds and sheer amount of people around me? Did they never know that I was being bullied and teased every single day? Did anyone ever take the time to actually talk to me about what I enjoyed doing and then they would have realised that I had ‘special interests’ and I could tell them anything and everything about these special interests?
No, nothing, zilch 😦
Because I was never given the help and support I so desperately craved my difficulties have been given many labels ‘anxiety’ ‘depression’ even ‘Bi Polar’ in 2008, but I’ve always believe that there was something more, but too afraid to tell anyone in fear of being labelled as ‘strange’ or ‘weird.’
I’ve been involved in conversations where professionals are confused as to why I can explain exactly how my child is feeling, especially in terms of sensory overloads, for example, I know that she’d be distracted by a label in her uniform as I used to feel the same, labels could effect my whole day at school, like a razor blade is cutting into my skin around my neck.
I do wonder which teachers were surveyed for ‘YouGov’ on behalf of GL Assessment, (The leading provider of formative assessments to U.K. schools,) as an Early Years teacher of 13 years, even before having my children I would never have ‘blamed’ parental pressure, I just saw them as passionate parents wanting the best for their children.
I have, sadly, heard many comments such as “you didn’t get all these Special Needs in my day,” and “they are just naughty” but I will always argue that today, in the present we are very lucky to have such a wealth of knowledge via the use of the Internet and more reasearch is thankfully done to understand SEND better than, say even in the 1980’s when I was born.
If I ever have time mid-meltdown, (or sensory overload,) I would conclude to myself that I could never make any of this up, whilst I’m attempting to calm my child down, by safely restraining her, even though I’ve never had any safe restraining training, though I’ve asked for this time after time.
In fact, after 3 attempts at applying for DLA I’m now too afraid to apply again, and we save every penny to provide our child with sensory equipment to support her ‘sensory seeking needs’ and equipment like a ‘weighted blanket’ to calm her. In fear of being accused of making it all up to gain benefits. I don’t want money, I don’t want preferential treatment in exams once she reaches this age, as the TES report suggests that:
“Teachers claim that some parents are pushing for a special needs diagnosis so that their children will be given preferential treatment in exams.”
My priority is that my child is happy which is paramount, I spent so much time revising for my GCSE’s in fear of not passing, that I shut myself away from the world and was verging on a breakdown just in fear of failure. I HAD to pass those exams and I missed out on so much in this time, I wanted to match up to the other students around me to appear ‘normal’ and I do not want this for my child.
I’ve wanted to give up this fight so many times, being knocked back and sent away, but I can’t just leave it, I’ve had to grow a massive backbone which is a huge thing for someone who finds it difficult to oppose anyone else’s viewpoint and has avoided any difference in opinion or confrontation for most of my life.
I’m now not ashamed to advocate for my child, before we started our journey I would let people walk all over me and just agree with what professionals say, and thought they are experienced, they must be right it must be my parenting…
… I am a fighter, warrior mum and I do this because I want understanding and support for my child, for now, for teenager years, and to enable her to reach adulthood without being afraid to be herself and for others to understand her and to accept her for the fantastic, individual and unique person she is 🙂
Thanks for reading 🙂