Jade is a parent of two boys aged 6 & 8, both are autistic, and her 8 year old is non speaking. She offers peer to peer support for parents of autistic children.

When my eldest was around 2 and a half we were introduced to the Picture Exchange Communication System (PECS).  Whilst I knew about Makaton and had some idea about AAC systems I hadn’t heard of PECS, it was totally new to me.  I remember thinking how can there be a whole communication method I have never heard of!

early days

In the early days I was definitely struggling, I didn’t have the confidence or knowledge in how best to support my children.  I was surrounded by people who didn’t understand autism or PECS which really had an impact, I felt very isolated.

I was lucky and had lots of great professionals working with us such as speech therapists, specialist teachers and the staff at the Children’s Centre.  They all had lots of knowledge to offer and were very supportive, but that’s their job and there was still something lacking. That thing was shared experience.

finding your tribe

There is something quite unique about having children that are different and don’t fit into the mainstream system.  Your priorities in life very quickly change and the way you see society is turned on its head.  It was meeting other parents with children just like mine that made all the difference for me, finding others who were on the same path as me.  At my PECS Level 1 training there was a room full of speech therapists and teaching assistants, only two of us were parents.  As the only two mums of children who were PECS users in the room, we quickly got chatting and connected.

I have since met other parents on courses and at SEN playgroups who were going through the same things.  We could talk about EHCPs, PECS and assessments but with an understanding of how it feels to go thorough it as a parent.  There is something wonderful about being able to talk about your child with someone who truly gets it.  I spend a lot of my time explaining my children’s differences to other people which can be exhausting, so connecting with other PECS and SEND parents has been a really valuable experience.  There is a level of emotional understanding and support amongst SEND parents that is very powerful when you need it.

the autism page is born

Whilst there is a wide variety of support and information available for parents like myself – it can be a bit of a minefield of misinformation and a challenge to find what is right for you!  Prior to having children, I worked in information provision, so it felt natural to share everything I was learning.  As I learnt more about PECS, I wanted to share it with other parents I was meeting, and I quickly found myself repeating things so I decided to write it down.  I created The Autism Page website a place I could share information that had been helpful to me.  The Autism Page provides information written just for parents that signposts to where you can go for more help.

When my kids were younger sleep was a big issue, so I was often awake at night, and this was usually when I was researching how to support my children.  The internet can be amazing at providing connections and information.  However, it can also be a very dangerous place that can quickly send you down the wrong path.  It was a huge motivator to me to try and put links to all the good information in one place online, so it can be accessed any time.

Even now 6 years later I get so much out of blogging about all things autism because it is connected to my daily life.  I have managed to connect with so many other parents who all have the same goal as me, finding the best ways to support our children.   It has also provided some wonderful opportunities for me and my family. The expertise it has helped me to build up has enabled me to now work professionally in peer to peer support.  I work both for a local council delivering training on autism and for Bristol Autism Support a local parent support charity.

top tip

The top advice I would give to any parent whose child has had a recent diagnosis of autism or who is new to using PECS would be to seek out other parents, either locally or online, that are in the same position as you.  We all need people in our lives who understand us and peer to peer support can have a big impact.  If you want to connect with other parents of PECS users you will find some of us on Facebook in both the PECS User Support Group and The Autism Page Network.

By Jade Page

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