This month’s blog is written by guest blogger Mandy Aulak. Mandy’s son Swaran started using PECS a few years ago due to speech regression. It was a huge success and revolutionised their lives.

Worrying Times

child w sittingMy journey into the world of autism began when my son, Swaran was 2 years old. Until then, he had been developing as expected, but suddenly, his speech regressed. I was so worried that I researched why and discovered that it was a red flag for autism.

Then I noticed other signs, such as lack of eye contact and not responding to his name. Many sensory behaviours became apparent such as tip-toe walking, mouthing objects, running etc. He was non-verbal (apart from saying mummy and a few single words) and his attention span was almost non-existent.

When he received his diagnosis of autism at age 3, I was petrified about what the future would hold.  I couldn’t see him being able to sit down and learn; he was locked in his own world.

Searching for Support

Like many parents, I was searching for ways I could help my son. I did the usual thing of reading books on the subject and attending courses about autism; all of which increased my knowledge and awareness but were not specific to my son’s needs.

I realised Swaran needed specifically tailored intervention, and it was this recognition that led me to analyse his Education Health Care Plan (EHCP), which proved to be a light bulb moment. His EHCP did not clearly map out all his special education needs and neither did it set out all the provision required to meet those needs. I therefore decided to appeal the contents of his EHCP and instructed a team of relevant experts to assist. The outcome was positive, as my son now had an EHCP that was specific, identified his special educational needs and adequately quantified the provision required to meet those needs.

child in the Gruffalo woodsSo having obtained an EHCP that was now fit for purpose, I knew this was only part of the story. I needed to ensure that not only was there an effective dialogue with the school, but I also needed to maximise his learning opportunities outside of school, through everyday activities.

PECS® to the rescue

Due to his speech regression the Picture Exchange Communication System (PECS) had been recommended in Swaran’s EHCP and given that communication is essential at all times and not just in school, I decided to attend the PECS Level 1 workshop. The impact of this decision was huge and to say that it revolutionised our home life is an under-statement. It gave Swaran a “voice” when he didn’t have one, it enabled him to communicate his needs, his sense of humour emerged, and it showcased how clever and smart he is.

As for me, I became self-styled “number one PECS fan.” I liked the fact that PECS is a prescribed method and has a “road map”, and so as long as I followed the protocol, I knew I would see results. As a lawyer, I also loved the fact I could collect data and track progress!  Of course there are many reasons other than speech regression for using PECS, such as children who have never developed speech in the first place or those with selective mutism.

child using picture exchange communication systemComing on in leaps and bounds

As Swaran’s communication skills increased through PECS and speech and language therapy, his challenging behaviour reduced. He also made progress in other areas helped by occupational therapy, physiotherapy, horse-riding and from his wonderful Independent Special Educational Needs teacher, who helps us with anything and everything! I am a big believer in working with and alongside the therapists who are working with Swaran. This has produced amazing results. Eventually Swaran’s vocabulary became so big (450+ words) that he couldn’t possibly carry his PECS book round with him. The sentence strip also became too short for his long sentences. I attended a one day workshop to learn how to help him successfully make the change from a PECS communication book to a speech generating device.

 

Where we are now

Today, Swaran is 8 years old and somewhat of a chatterbox- I can’t get enough of hearing his voice. He occasionally still uses PECS, usually when he is in a stressful situation. Swaran has a variety of interests and he is currently learning to play the piano. He enjoys eating out in boy writing at a tablerestaurants, trips to the cinema/theatre (particularly if he can eat ice cream) and trains. He is also building friendships and loves spending time with his “girlfriend” Jia.

As for me, I have learnt and continue to learn from Swaran each day. Whilst I don’t have all the answers, I am no longer afraid of what challenges may come our way. I’m still a regular visitor to the fantastic PECS User Support group on Facebook – I strongly recommend that anyone implementing, or considering implementing PECS takes a look. I believe a holistic approach to helping my child has worked, (i.e. working with different therapists, considering dietary interventions etc) but key to my approach has been education. It is for this reason I co-founded Talem Law, a law firm specialising in special educational needs and employment law. I want to be able to help other parents, using my legal skills, but also with empathy and understanding as someone who stands in their shoes. Every child with special educational needs should be given the opportunity to achieve their potential. I hope our story comforts and inspires others.

By Mandy Aulak

Take a look at some of our other parent stories.

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