It’s the thing that drives me most and yet conversely can be my Achilles Heel. The intense love and desire to nurture, protect and advocate for a child with a disability can be something of a double edged sword. A couple of times recently while on duty giving autism presentations I have experienced a little of the raw emotion that can so affect my functioning. Hearing the first person account of a wonderful autistic woman provided an insight into some of the challenges in the life of an autistic child. It was a chance to catch a glimpse of the experiences usually masked by the limitations of autism and as such I was spell bound. I was also trying hard to hold my feelings together. The chance to gain a degree of this type of understanding is so very valuable. To hear it first hand can evoke powerful emotions. The price of feeling a little wobbly was on reflection worth paying.
These emotions, whether triggered intentionally or not can be a great disadvantage in formal care reviews for parents and carers and is something that requires to be acknowledged and avoided where possible. Whether it be losing your temper, becoming upset or simply being intensely uncomfortable showing vulnerability in the headlights of a gathering of professionals it is one of the most common difficulties faced by parents and carers. It is a structural inequality in a system set up for professionals by professionals.
This week I have upgraded my page into more of a website.(inspiredbyautism.org) I have started to include further information that I hope is helpful. Under the Carer’s Resources menu you will find some tips for negotiating reviews. Stay strong and remember that displays of emotion arise from your deep love and care.