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Fighting the case – Leo’s Story

We knew from a very early age that Leo had different needs and struggled with communication. Up until 3 years old, Leo was non verbal. He would watch something with us and try and recreate the sound to no avail. Initially I contacted my local speech and language therapy services through my GP. Having seen the lack of resources in certain settings, I wanted to act quickly and flag my concerns at the earliest possible opportunity. 

Preparing to fight the case

We went through the process of receiving some support and Leo was able to start school in a mainstream setting. Whilst this was OK for his foundation year, I did have a number of conversations with the staff where I asked for evidence of Leo struggling with his communication. We felt that we had to start gathering evidence of his difficulties in preparation for ‘fighting our case’ to get him into more specialist provision further down the line.  At the age of 5, Leo was verbal but it was his level of understanding that was still really delayed and the world was a very confusing place. He was quite isolated and didn’t really interact with his classmates.

We struggled to find consistent speech and language support for Leo from the age of 3 onwards. He tended to receive a few sessions before being placed with a new therapist. This really didn’t help with his development although we kept with it at least to collect the evidence we needed for his statement. I know lots of other parents who have had to through similar experiences with many even having to pay for private therapy to help gather the evidence they needed for Education Health Care Plans (EHCPs).

Eventually the paediatrician diagnosed Leo with Autistic Spectrum Disorder (ASD).

“I had to stop working to dedicate my time to helping Leo.”

By the time we decided Leo needed a statement he was around six years old. This was quite a stressful time for the family, as we had requested it three or four times from the local authority without success. The last time we requested, we had made it clear that if he wasn’t able to attend a specialist setting, he would be out of school. Unfortunately by this point, Leo had begun to refuse to go to school. The whole process from submitting our first statement to actually getting him placed in a specialist setting took over a year!

What added to our worry is that we noticed that Leo’s personality was changing and his well being was impacted. He was losing his confidence and becoming very sad. He was digressing in his skills as we were still encouraging him to attend school. What made things worse, his peers started to treat him differently as his needs became more apparent, this lead to him becoming very anxious at school and at home. It was so frustrating to go through as a parent, the school struggled to get any specialists to support him and it was around this time I actually stopped working to dedicate my team to helping Leo.  

I can’t put all the blame on this setting as I remember training as a teacher and there wasn’t a huge amount of information on teaching pupils with communication difficulties available.  I believe, if the environment is right and the support is there, Leo or any other child with similar difficulties can thrive to their full potential. However, this wasn’t the case in this context.

“We faced an uphill battle.”

When we began looking for specialist support, we faced an uphill battle. We looked at a number of specialist providers but Dawn House  really fitted the bill. Due to his communication needs, Leo needed to be in an environment that would support him developing his social skills on top of his speech and language. After receiving the assessment, the results were fantastic. There was so much detail on his speech, language and learning that we had never had before – we learnt so much about his attention, listening, expression, independence and organisation skills, that we had never gained from previous reports. We approached our local authority and had to fight our case as to why Dawn House was the right fit. After battling with our local authority, Leo started at Dawn House School in September 2013 at 7 years old. We opted for a quick transition, which really benefitted him. For the first time in his education, I heard Leo say ‘I get it..I understand.’

Academically, Leo started at quite a low level and it was clear he couldn’t have gone through to the next Key Stage in a mainstream school…Not only from an academic stand point but for his mental health. It is crushing to see your child struggle like that. It has been a slow process but the consistency of the staff and integration with pupils has really helped. It is great to now see him thriving at Dawn House and despite his delay he is making real progress. Now 11, Leo is able to reflect on his experiences in mainstream and he sometimes asks me ‘Why did you send me to that awful place…I really didn’t understand what I was doing.’

Now, anything is possible.

Leo is now able to monitor his own emotions much better and is able to use a feelings board to help articulate how he feels. We have adopted many of the strategies he learns at school at home to great success. It has taken years but having this attention to social communication and well being be integrated into the curriculum is brilliant. He has just transitioned into secondary at Dawn House with ease and that is a huge milestone. Our family life has improved massively. The tension we once all felt before his diagnosis or during the statement process has gone.

It is important for me and Leo to learn how to communicate not only to reach his potential academically but also emotionally and socially. We now believe Leo has the skills to achieve whatever he wants to.