Me, my son and SEND labels

I've been thinking a lot since my initial response to the report by GL Assessment - which really triggered my “Tiger mom” response. One of the points that I've been pondering is labelling - since the title of the report “focus on labels rather than needs”. There are many different viewpoints and parents feel passionately on this topic. 

My own views about wanting or needing a label has changed as our circumstances changed, and how important it was for us to have a label to get support for our Son.

I didn’t want the label

When my Son had some issues at nursery, we were asked permission for the Inclusion team to observe him to try get more insight into the issues. I knew nothing about autism or special needs, or what a visit from the Inclusion team would mean for my Son. 

His key worker had recently left and I believed the issue was with the new key worker rather than my Son, as we hadn’t had issues before and didn’t have issues at home. 

Worried about a review being in his records and not knowledgeable enough to make an informed decision, I believed that the nursery were looking for excuses rather than admit the challenges of the setting. As a result, I was defensive and resistant to any outside involvement being brought in. 

I wanted my little boy to have every chance of success, and didn't want him to be written off as a difficult child with a behaviour issue. When his behaviour settled down, I felt justified in my beliefs but I was wrong. 

It was the fear of a label that prevented me trying to get early support for my Son.

He was judged without a label

Within weeks of starting school we were regularly being called in to discuss his increasingly challenging behaviour. At it was questions about whether anything at school could be upsetting him, then it was discussions about the behavioural incidents, and eventually it was concerns raised about whether the school was the right setting for him.

Before the October half-term it had escalated to round-table discussions with the teacher, SENCO, head of junior school and headteacher. You know it is just a matter of time when each meeting is officially minuted by one of the school secretaries. Without time on our side, I knew I had to come something and quickly. 

I consulted the Great Oracle (a.k.a. Google) about possible underlying behavioural conditions, to see if there was anything that could explain why my child was so challenging at school (but not at home). I needed to understand for myself, so I could explain to the school in the hope that they would give him the time and support he needed to settle down. 

Without a label to explain his behaviour, he was given one - naughty. 

We struggled for a label

According to the Great Oracle the possible reasons included a surge in testosterone in boys around 5/6 (quickly ruled this one out), ADHD and Aspergers. With this new insight I went off to my Doctors, explained our situation and asked for help. With the promise of a referal to a paediatrician I left hopeful - thinking that with the right understanding we would be able to work with the school to support my Son rather than him be written off as naughty.

The appointment letter for the paediatrician didn't come - so I chased, and chased, and chased. The waiting time for priority cases was 5 months, and we were not a priority. How much more of a priority did you need than a child who was on the verge of being kicked out of school? Thankfully my Doctor helped get us noted as a priority and we were put on the waiting list.

With no signs of an appointment and the situation at school deteriorating, we went for a private assessment (and then a few more). It was like stepping onto a fast moving train and we found ourselves caught up in a whirlwind of assessments, reports and reviews. It was manic, but I was prepared to do anything I could to get a diagnosis. 

I was desperate for a diagnosis so we could give the school a label to explain his behaviour, and get him the support he needed before he was kicked out of school. 

We questioned the label

Fast forward 9 months. We had a diagnosis (or several) - Autism Spectrum Disorder (ASD), social communication difficulties, and proprioception sensory needs. We also had an EHCP (a story in its own right), and a place in a unit attached to a mainstream school which specialised in autism.

We were hopeful and knew that we were lucky - many parents struggled for years to get any support at all. This optimism didn't last long as we quickly found ourselves at a new table talking about behavioural issues and the suitability of the new setting. Less than 2 months, and we were having to fight yet another school to prevent our Son from being pushed out.

By now we new that our Son didn't fit the classic definition of autism - he is imaginative, is not ritualistic, maintains eye contact and didn't seem bothered by a lack of routine (in fact routine often had a negative impact). The diagnosis or label didn't fully seem to fit. Even with label he wasn't getting the support he needed, as the strategies that worked for others with the same label didn't work for him.

The label was able to get us some support, but it didn't lead to the right support and we questioned whether our Son had been given the wrong label.

We shifted our focus from the label

With another school placement breakdown looming, we went back for more assessments. The school and CAHMS believed he had ADHD, however this didn't seem to fit either. We believed that he might have Pathological Demand Avoidance (PDA), which is not widely recognised.

We wondered whether to get him assessed privately again, however questioned the value of another assessment for a little boy whose world had been turned upside down and was starting to become resentful of the many medical appointments.

Things changed after he moved to his third school - a special school for children with Behavioural, Emotional and Social difficulties. Within a week the ADHD was dismissed, and many of the traits that I had thought might be due to undiagnosed PDA seemed to calm down.

Suddenly it seemed like extreme anxiety at school and a need to control the world and people around him were the reasons for his extreme behaviour. In the right setting and with the right support, he went from several behavioural incidents per week to nothing in nine months. He refusal to write or do work in lessons is changing, and he has made some great progress.

I don't know whether he has atypical autism, ADHD, PDA or something else.  None of the labels exactly fit and he seems to have a little bit of each. Right now I don't feel we need to put a name to it

In the end we didn't care what you called it, as long as he was able to receive the help he needed.

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Other parents views

Next week I'll be sharing the results of my 2 recent twitter polls, along with some of the experiences that parents have shared with me.

I'm keen to hear from other parents on whether they feel labels are required to get support.

Please leave your thoughts on my Facebook post, or in the comments below. If you are on twitter it would be great if you could vote in the poll that I am currently running.

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